Author Topic: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.  (Read 2994 times)

wenchsenior

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Sorry this is so long, but I am about at my wit's end right now.  I am frustrated, pissed off, and starting to be frightened of long term disability with no diagnosis. I need advice on what to pursue next with doctors.

I have been dealing with autoimmune-suggestive symptoms for 5+ years without a concrete diagnosis, but things have gone completely off the deep end in the past year.  I feel like doctors have been completely unhelpful with my latest worsening of condition; they keep shrugging and referring me back and forth, or telling me it's in my head or that I should try anti-depressants. I have no problem with antidepressants and would be happy to try them if my main problem was depression. I've had a couple of episodes of clinical depression, but not for about 16 years, and what I currently am dealing with IS NOT DEPRESSION.  And I really doubt doctors would keep bringing it up if I were a man.

Background:

First of all, I have a longstanding confirmed endocrine disorder of reproductive hormones/insulin, which has been diagnosed using all available criteria and has been well controlled with diet alone for many years.  One of the side effects of the disorder is reactive hypoglycemia, but I have not had issues with that since shortly after diagnosis unless I eat poorly (rare).  I don't think my symptoms of the past 5 years are due to this disorder.

I have longstanding mildly elevated prolactin and pituitary imaging shows no obvious gland enlargement.  Back in the early 2000s, on very strong urging from a reproductive endo, I treated it with medication but had a hard time tolerating meds and eventually quit (possibly a mistake). Since then prolactin has gradually risen back to previous elevated level, but my current endo insists it is not high enough to be of concern.  The symptoms listed below started about 1 year after I stopped treating the prolactin, so it's possible there is connection.

I've suffered from life long chronic joint/muscle pain and severe headaches (which I guess are migraines) that come in spells lasting from 18-24 hours to several days. Feels similar to onset of severe flu...tendons snap, joints grind, muscles ache, and migraine like headaches will progress to puking stage rapidly unless I knock them back with pseudoephedrine/otc painkiller combo.  Particularly bad pain episodes resolve with opioid like high and euphoria that lasts several hours.  My chronic pain pattern seems similar to fibromylagia or mysofascial syndrome, improved with regular exercise, worsened with barometric changes and hormone fluctuations. Pain issues have worsened in frequency in past 4 or 5 years.

I suffered from IBS like overactive touchy digestion since adolescence, as well. Mother's side of the family tends to have this. I tended to be hungry all the time, as well, but not problematically so. Never had a real weight problem, but gained weight if I ate junk or didn't pay attention.

About 5 years ago, a bunch of new symptoms started within 3 months of each other. 

1) Mild gastrointestinal infection involving about 2 weeks of acid reflux, mild nausea, diarrhea, etc. Resolved on its own, but since then, digestion did 180 degree switch to super slow with little peristalsis and chronic constipation. I already eat high fiber, so this just results in me being bloated about 85% of the time.  Tried supplements, exercise, cutting out my typical daily wine with dinner, different kinds of fiber, with little improvement. Main effects seem to come from hormones (high progesterone makes it worse).

2) I had been very sedentary and when problems started I began consistent light 20 minute aerobics and walking.  Did not help digestion much, but did precipitate or exacerbate problematic weight loss...despite trying to combat weight loss with less aerobics and higher liquid calorie intake (healthy fats, etc), I dropped from the higher end of my healthy weight to underweight, and have struggled for the past 3 years to maintain >100 lbs.  Simultaneously, I have been gradually losing muscle mass in torso, shoulders, hips, and thighs. I'm already lightly built and I periodically try to combat muscle loss with light weight training with limited success due to pain issues and tendon injuries, probably associated with chronic pain issues noted above. 

3) Simultaneously, developed chronic urinary tract infections, or infection-like symptoms.  Labs sometimes confirmed active infections, but could not culture bacteria.  STDs and fungus ruled out.  Kidney panels normal and kidneys looked normal on 2 different scans.  Occasional white blood cells or trace blood in urine, even when asymptomatic. Suspect the ~12 rounds of antibiotics over 5 years, might have resulted in FURTHER health issues now.  Recent diagnosis of extremely narrow eurethra, so possibly uti symptoms were just caused by physiology and not related to my other problems.

4) Simultaneously, I began developing rashes.  Shingles-like stinging plaques erupting in lines up the back of my calf, psoriasis across chest and stomach, etc. Keratinitis on my back.  I had never suffered from rashes in my entire life, and now they come and go with seemingly no warning.

5)  Simultaneously, I began to experience 'electric current' type tingling in feet and calves.  Episodes initially associated with pain flares/headaches, later occasionally other times.  Almost always at night. No sensation in hands or arms. 

6) Began to also experience stinging/sunburn parasthesias of the torso and chest, occasionally extending to back or scalp. Occasional flush, but no rash associated with this. This was always confined to daytime.

7) Voice began to crack and go hoarse easily. I stopped being able to sing easily, and could not really yell anymore or talk loudly without getting hoarse.

So, after about 2 years of this, I requested a basic autoimmune panel, thinking I was obviously hypothyroid. But thyroid hormones were normal. ANA and RA were negative, and when we did an MRI of my brain looking at pituitary, there were no signs of Multiple Sclerosis.

So I lived with it a few more years, and began to attribute to perimenopause.

Standard physical workups over the next 3 years showed occasional mild neutropenia, elevated prolactin, and LOW alkaline phosphotase (unusual).  Eventually, my endo followed up thinking I had a rare bone disorder, but nothing definitive turned up (nor did I have symptoms consistent except for the joint pain).

Follow ups for chronic lower back pain finally confirmed scoliosis of the lumbar spine (moderate, but enough that I figured that might be contributing to digestion issues, pain, and possibly foot tingling).

A) Then last summer, I began experiencing occasional sharp pains the back of my eyes, esp the left. Eyes became sore and red, which I thought might be allergies. Vision in my left eye went suddenly wonky: transient black 'splatter' began to appear in vision whenever I move my gaze.  Seems worse during exercise or when I'm very hot.  Opthomalogist could see nothing structurally wrong.  A second MRI of brain and optic nerves came back normal. 

B) Simultaneously, I began to experience occasional episodes of racing heartbeat.  At first, I thought they were anxiety attacks, but they seemed to occur randomly and not associated with active worry...including waking me up at night.

C) Hair  began to fall out in massive chunks...like I've taken a week whacker to it.  Dermatologists checks iron levels, syphillis (HA!), ANA antibody for dermatoid lupus, vitamin D.  All normal. Bioposy confirms autoimmune alopecia.  Several months of steroid injections do nothing.

D) Noticed flesh around my eyes suddenly darker and puffy (bags). Unusual for me.

E)  Muscles began to seem weaker, but inconsistently. I attributed this to my thinness and lack of weight work and began again to try light weights, trying to build condition up. Not much progress, further aggravation of joint, tendon, and muscle pain. Very discouraging. Xmas 2017, I strained/separated my left (weaker) shoulder, and more or less immobilized it to allow healing.  May have strained nerves and this has contributed to left arm/hand weakness and occasional numb/cold sensation.

Just after Xmas, both husband and I get what appears to be mild upper respiratory infection that seemed to resolve in about a week.

F) Jan 22nd all hell broke loose.   Woke with severe pain and stiffness in neck and left shoulder.  Vision in right eye went wonky in exactly the same way as left eye last summer (transient splatters with addition of transient white vertical line). Severe electrical 'current' sensation flaring up at night, as if someone was running a current through my body from feet to scalp, buzzing sensation lasting hours, and coming occasionally during the day as well. Severe episodes of racing heart. Initially, I thought this was a  ministrokes, but my pupils reacted identically, and I could always talk, move all limbs, face, etc, equally. Reflexes ok. 

Within a couple days I experienced sudden onset of muscle weakness, tremor, and in-coordination (trouble manipulating hands, even typing at times), trouble squatting/lifting arms above head or extending arms forward,  especially on left side....knees feel weak and wobbly, balance impaired. It felt exactly like severe hypoglycemia, so I bought blood sugar monitor, but weakness episodes did not always correlate with lower blood sugar. 

Initially, I suspected Guillain-Barre, but the weakness pattern was wrong and did not progress like G-B. 

I went to my GP around 1 Feb. He could not id practical weakness (I was having a more 'normal few hours').  He ran basic blood work with thyroid hormones (all normal), and referred me to neurology (a 2 month delay for new patients).  Within a couple days, I developed new symptoms: severe dry cough and chest pressure (not exactly pain, but disconfort around my sternum and in my lower throat area). No problem swallowing but left side didn't feel right.

I felt sure this was a flare of Grave's disease (hyperthyroid), which my mother had.  It would explain all symptoms, including eye swelling, and lower throat upper chest discomfort.  But my endo dismissed this, saying my thyroid felt normal and my TSH was normal. He showed no interest in doing a thyroid scan, but reluctantly agreed to run thyroid antibodies.

Grave's disease antibody came up 280% of baseline.

But endo insisted that since my TSH was normal range, my Grave's could not be active enough to be causing symptoms.  He attributed my obvious tremor to anxiety or depression, or a neurological problem, and said I should take an anti-depressant etc

In consultation with my GP, I decided to try a very low dose beta blocker for racing heart and tremor (this would be prescribed for active Grave's disease in any case). Took it for a month, found that it helped with heart episodes, and mildly with tremor, but not enough to make a big difference. I stopped taking it after 1 month.

Saw the opthamologist (again) and (again) he could see no problem with my wonky right eye or explain my vision problem. He agreed that low stage Grave's eye disease might cause swelling, but couldn't figure out why it would cause 'splatter' effect.

Began to experience severe muscle twitches, that would last for hours or days, migrating round body from foot sole to bicep to eye lid to scalp.  Also began to experience stiffness and cramping in both calves.

At end of Feb, with no improvement in chest/throat, dry cough,  I went back in to see GP, who ordered ekg (normal) and x ray (normal).  She diagnosed pleurisy brought on by whatever else I had.  She prescribed a week of steroids, which I waited to take until after neuro appointment. When I did take them, they did nothing to reduce chest discomfort or cough.

Gradually, symptoms began to lessen, with flares still happening, but slightly less often.  Occasional stretches of 2-3 days with no or minimal symptoms. Normal strength and coordination, minimal tremor, minimal coughing.  Followed by flares of one symptom or another lasting hours to days. 

Finally got in to see a neuro (young, intern I think).  I was careful not to bring up horrors like ALS, Parkinson's, etc, since I'm sure they deal with that sort of neuroses constantly. I said I thought that if the cause was neurological, it was most likely autoimmune, and that of the likely autoimmune options, I thought we should check for myasthenia gravis and polymiositis (muscle inflammation). She agreed and had no further input except to say that it couldn't be multiple sclerosis, since I'd had two 'clean' brain MRIs in 5 years.  I did not argue with this (though I've never had a spinal tap or MRI, and so I don't think MS is completely excluded).  The neuro insisted that my symptoms were almost certainly due to Grave's disease and that my endo should be dealing with it. She said I should try antidepressants WTF.

So essentially, both specialists think the OTHER department should be diagnosing/managing me. Terrific.

The bloodwork for muscle inflammation and myasthenia gravis came up negative.

2 weeks ago, I popped a massive new sort of rash all over my torso (based on googling, it appears to be a rash of unknown etiology called pityriasis rosea, possibly triggered by virus or bacterial infection).

I have another appointment tomorrow with my GP. At this point, I am at a loss as to what to pursue next or what to suggest. I'm sick of doctors acting like this is in my head. I'm unable to consistently even walk for exercise, or even to be certain of doing household chores when I have 'flares's. 

Here's what I know:

I have 2 confirmed autoimmune things: Grave's disease antibodies and autoimmune hair loss.

I also have elevated prolactin, which can act as an autoimmune stimulator.

I have a rash that could be virally triggered, or autoimmune-triggered

Blood work has show intermittently elevated B6, which can be nerve-toxic and could be causing some of my tingling and parasthesias, though probably not my muscle weakness and tremor. Neverthless, I have stopped my once per week B-complex and all other vitamins except D with calcium a couple times per week if I haven't gotten any sun.

I definitely do not have myasthenia gravis. I most likely do not have autoimmune muscle disease, unless the flares are coming very infrequently).  I have normal TSH and free T4 at the moment.

Chest X ray indicates I (most likely) don't have lung cancer, pneumonia, sarcoidosis, or tb.

What the hell do I pursue now? 

Am I having periodic thryoid inflammation dumping hormones that my blood tests have missed? Could I have throid nodules (which an x ray wouldn't have spotted)?  Why is my chest cartilage so damn inflamed (it's been 10+ weeks at this point).  Why does my voice keep cracking and going hoarse and why doesn't anyone care?  Should I go back to neurologists and request a spinal mri and tap? Or is multiple sclerorosis truly unlikely given the clean brain mri last summer (prior to all these recent symptoms?). Could this be a systemic viral infection of some sort, like mono only with different presenting symptoms? Could it be metabolic, like Addison's? Could it be an autoimmune vascular disease or connective tissue disease, presenting weirdly?

Should I request a referral to a rheumatologist?

I mean, seriously, wtf should I look into?  I'm already looking to get a different endo. 

So much money spent since Xmas, and so few answers!  I'm sick of being sick!  I can take a very bad diagnosis at this point, as long as I know what the hell is going on and what to expect! The uncertainty is horrible.

Sorry that was long, I needed to vent

sonjak

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I'm not a medical professional.

I have had health struggles over the years and wanted to send a HUG.  This sounds absolutely miserable.  Might be worth taking antidepressants to help deal with that piece of it.  NOT in your head but it would be difficult to function with those symptoms and those might help, you know?

Reading the summary of your symptoms... and I wondered if you are being exposed to something toxic/poisonous?  Metals or chemicals??

Frankies Girl

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Holy hell. I have nothing that might help you, but I am so so sorry you're going through this. It sounds like a living nightmare.

I have a mild autoimmune disease with mild symptoms that still manage to impact my day to day life, but nothing like this and I feel nothing I could suggest would be of any help to you.

Except... don't give up on trying to find answers. Especially if the doctor(s) you're seeing are the type to pat you on the head and then send you out the door because they don't want to do proper exploration on your condition. And maybe seek out doctors affiliated with teaching hospital systems? I live in a city with a medical center/university group that is cutting edge as they are also affiliated with a very well respected and nationally recognized organization, and while getting in to see some of those doctors might be a longer wait, they're into dealing with the stuff that the more stuck in the routine doctors won't bother with. Places like the Mayo Clinic, Baylor College of Medicine or MD Anderson, Johns Hopkins (which is rated highly for neurology)...
I frequently have no idea what I'm talking about. Like now.

FIREd as of: March 6th, 2015!

Ting is awesome! Get $25 if you use my referral code: https://z0p1rd31m89.ting.com/

Cassie

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I second the idea about going to a teaching hospital because doing that saved someone's life that I know. He had something very rare. I am so sorry.  Hugs:))

justchristine

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Sorry this is so long, but I am about at my wit's end right now.  I am frustrated, pissed off, and starting to be frightened of long term disability with no diagnosis. I need advice on what to pursue next with doctors.

I have been dealing with autoimmune-suggestive symptoms for 5+ years without a concrete diagnosis, but things have gone completely off the deep end in the past year.  I feel like doctors have been completely unhelpful with my latest worsening of condition; they keep shrugging and referring me back and forth, or telling me it's in my head or that I should try anti-depressants. I have no problem with antidepressants and would be happy to try them if my main problem was depression. I've had a couple of episodes of clinical depression, but not for about 16 years, and what I currently am dealing with IS NOT DEPRESSION.  And I really doubt doctors would keep bringing it up if I were a man.

Background:

First of all, I have a longstanding confirmed endocrine disorder of reproductive hormones/insulin, which has been diagnosed using all available criteria and has been well controlled with diet alone for many years.  One of the side effects of the disorder is reactive hypoglycemia, but I have not had issues with that since shortly after diagnosis unless I eat poorly (rare).  I don't think my symptoms of the past 5 years are due to this disorder.

I have longstanding mildly elevated prolactin and pituitary imaging shows no obvious gland enlargement.  Back in the early 2000s, on very strong urging from a reproductive endo, I treated it with medication but had a hard time tolerating meds and eventually quit (possibly a mistake). Since then prolactin has gradually risen back to previous elevated level, but my current endo insists it is not high enough to be of concern.  The symptoms listed below started about 1 year after I stopped treating the prolactin, so it's possible there is connection.

I've suffered from life long chronic joint/muscle pain and severe headaches (which I guess are migraines) that come in spells lasting from 18-24 hours to several days. Feels similar to onset of severe flu...tendons snap, joints grind, muscles ache, and migraine like headaches will progress to puking stage rapidly unless I knock them back with pseudoephedrine/otc painkiller combo.  Particularly bad pain episodes resolve with opioid like high and euphoria that lasts several hours.  My chronic pain pattern seems similar to fibromylagia or mysofascial syndrome, improved with regular exercise, worsened with barometric changes and hormone fluctuations. Pain issues have worsened in frequency in past 4 or 5 years.

I suffered from IBS like overactive touchy digestion since adolescence, as well. Mother's side of the family tends to have this. I tended to be hungry all the time, as well, but not problematically so. Never had a real weight problem, but gained weight if I ate junk or didn't pay attention.

About 5 years ago, a bunch of new symptoms started within 3 months of each other. 

1) Mild gastrointestinal infection involving about 2 weeks of acid reflux, mild nausea, diarrhea, etc. Resolved on its own, but since then, digestion did 180 degree switch to super slow with little peristalsis and chronic constipation. I already eat high fiber, so this just results in me being bloated about 85% of the time.  Tried supplements, exercise, cutting out my typical daily wine with dinner, different kinds of fiber, with little improvement. Main effects seem to come from hormones (high progesterone makes it worse).

2) I had been very sedentary and when problems started I began consistent light 20 minute aerobics and walking.  Did not help digestion much, but did precipitate or exacerbate problematic weight loss...despite trying to combat weight loss with less aerobics and higher liquid calorie intake (healthy fats, etc), I dropped from the higher end of my healthy weight to underweight, and have struggled for the past 3 years to maintain >100 lbs.  Simultaneously, I have been gradually losing muscle mass in torso, shoulders, hips, and thighs. I'm already lightly built and I periodically try to combat muscle loss with light weight training with limited success due to pain issues and tendon injuries, probably associated with chronic pain issues noted above. 

3) Simultaneously, developed chronic urinary tract infections, or infection-like symptoms.  Labs sometimes confirmed active infections, but could not culture bacteria.  STDs and fungus ruled out.  Kidney panels normal and kidneys looked normal on 2 different scans.  Occasional white blood cells or trace blood in urine, even when asymptomatic. Suspect the ~12 rounds of antibiotics over 5 years, might have resulted in FURTHER health issues now.  Recent diagnosis of extremely narrow eurethra, so possibly uti symptoms were just caused by physiology and not related to my other problems.

4) Simultaneously, I began developing rashes.  Shingles-like stinging plaques erupting in lines up the back of my calf, psoriasis across chest and stomach, etc. Keratinitis on my back.  I had never suffered from rashes in my entire life, and now they come and go with seemingly no warning.

5)  Simultaneously, I began to experience 'electric current' type tingling in feet and calves.  Episodes initially associated with pain flares/headaches, later occasionally other times.  Almost always at night. No sensation in hands or arms. 

6) Began to also experience stinging/sunburn parasthesias of the torso and chest, occasionally extending to back or scalp. Occasional flush, but no rash associated with this. This was always confined to daytime.

7) Voice began to crack and go hoarse easily. I stopped being able to sing easily, and could not really yell anymore or talk loudly without getting hoarse.

So, after about 2 years of this, I requested a basic autoimmune panel, thinking I was obviously hypothyroid. But thyroid hormones were normal. ANA and RA were negative, and when we did an MRI of my brain looking at pituitary, there were no signs of Multiple Sclerosis.

So I lived with it a few more years, and began to attribute to perimenopause.

Standard physical workups over the next 3 years showed occasional mild neutropenia, elevated prolactin, and LOW alkaline phosphotase (unusual).  Eventually, my endo followed up thinking I had a rare bone disorder, but nothing definitive turned up (nor did I have symptoms consistent except for the joint pain).

Follow ups for chronic lower back pain finally confirmed scoliosis of the lumbar spine (moderate, but enough that I figured that might be contributing to digestion issues, pain, and possibly foot tingling).

A) Then last summer, I began experiencing occasional sharp pains the back of my eyes, esp the left. Eyes became sore and red, which I thought might be allergies. Vision in my left eye went suddenly wonky: transient black 'splatter' began to appear in vision whenever I move my gaze.  Seems worse during exercise or when I'm very hot.  Opthomalogist could see nothing structurally wrong.  A second MRI of brain and optic nerves came back normal. 

B) Simultaneously, I began to experience occasional episodes of racing heartbeat.  At first, I thought they were anxiety attacks, but they seemed to occur randomly and not associated with active worry...including waking me up at night.

C) Hair  began to fall out in massive chunks...like I've taken a week whacker to it.  Dermatologists checks iron levels, syphillis (HA!), ANA antibody for dermatoid lupus, vitamin D.  All normal. Bioposy confirms autoimmune alopecia.  Several months of steroid injections do nothing.

D) Noticed flesh around my eyes suddenly darker and puffy (bags). Unusual for me.

E)  Muscles began to seem weaker, but inconsistently. I attributed this to my thinness and lack of weight work and began again to try light weights, trying to build condition up. Not much progress, further aggravation of joint, tendon, and muscle pain. Very discouraging. Xmas 2017, I strained/separated my left (weaker) shoulder, and more or less immobilized it to allow healing.  May have strained nerves and this has contributed to left arm/hand weakness and occasional numb/cold sensation.

Just after Xmas, both husband and I get what appears to be mild upper respiratory infection that seemed to resolve in about a week.

F) Jan 22nd all hell broke loose.   Woke with severe pain and stiffness in neck and left shoulder.  Vision in right eye went wonky in exactly the same way as left eye last summer (transient splatters with addition of transient white vertical line). Severe electrical 'current' sensation flaring up at night, as if someone was running a current through my body from feet to scalp, buzzing sensation lasting hours, and coming occasionally during the day as well. Severe episodes of racing heart. Initially, I thought this was a  ministrokes, but my pupils reacted identically, and I could always talk, move all limbs, face, etc, equally. Reflexes ok. 

Within a couple days I experienced sudden onset of muscle weakness, tremor, and in-coordination (trouble manipulating hands, even typing at times), trouble squatting/lifting arms above head or extending arms forward,  especially on left side....knees feel weak and wobbly, balance impaired. It felt exactly like severe hypoglycemia, so I bought blood sugar monitor, but weakness episodes did not always correlate with lower blood sugar. 

Initially, I suspected Guillain-Barre, but the weakness pattern was wrong and did not progress like G-B. 

I went to my GP around 1 Feb. He could not id practical weakness (I was having a more 'normal few hours').  He ran basic blood work with thyroid hormones (all normal), and referred me to neurology (a 2 month delay for new patients).  Within a couple days, I developed new symptoms: severe dry cough and chest pressure (not exactly pain, but disconfort around my sternum and in my lower throat area). No problem swallowing but left side didn't feel right.

I felt sure this was a flare of Grave's disease (hyperthyroid), which my mother had.  It would explain all symptoms, including eye swelling, and lower throat upper chest discomfort.  But my endo dismissed this, saying my thyroid felt normal and my TSH was normal. He showed no interest in doing a thyroid scan, but reluctantly agreed to run thyroid antibodies.

Grave's disease antibody came up 280% of baseline.

But endo insisted that since my TSH was normal range, my Grave's could not be active enough to be causing symptoms.  He attributed my obvious tremor to anxiety or depression, or a neurological problem, and said I should take an anti-depressant etc

In consultation with my GP, I decided to try a very low dose beta blocker for racing heart and tremor (this would be prescribed for active Grave's disease in any case). Took it for a month, found that it helped with heart episodes, and mildly with tremor, but not enough to make a big difference. I stopped taking it after 1 month.

Saw the opthamologist (again) and (again) he could see no problem with my wonky right eye or explain my vision problem. He agreed that low stage Grave's eye disease might cause swelling, but couldn't figure out why it would cause 'splatter' effect.

Began to experience severe muscle twitches, that would last for hours or days, migrating round body from foot sole to bicep to eye lid to scalp.  Also began to experience stiffness and cramping in both calves.

At end of Feb, with no improvement in chest/throat, dry cough,  I went back in to see GP, who ordered ekg (normal) and x ray (normal).  She diagnosed pleurisy brought on by whatever else I had.  She prescribed a week of steroids, which I waited to take until after neuro appointment. When I did take them, they did nothing to reduce chest discomfort or cough.

Gradually, symptoms began to lessen, with flares still happening, but slightly less often.  Occasional stretches of 2-3 days with no or minimal symptoms. Normal strength and coordination, minimal tremor, minimal coughing.  Followed by flares of one symptom or another lasting hours to days. 

Finally got in to see a neuro (young, intern I think).  I was careful not to bring up horrors like ALS, Parkinson's, etc, since I'm sure they deal with that sort of neuroses constantly. I said I thought that if the cause was neurological, it was most likely autoimmune, and that of the likely autoimmune options, I thought we should check for myasthenia gravis and polymiositis (muscle inflammation). She agreed and had no further input except to say that it couldn't be multiple sclerosis, since I'd had two 'clean' brain MRIs in 5 years.  I did not argue with this (though I've never had a spinal tap or MRI, and so I don't think MS is completely excluded).  The neuro insisted that my symptoms were almost certainly due to Grave's disease and that my endo should be dealing with it. She said I should try antidepressants WTF.

So essentially, both specialists think the OTHER department should be diagnosing/managing me. Terrific.

The bloodwork for muscle inflammation and myasthenia gravis came up negative.

2 weeks ago, I popped a massive new sort of rash all over my torso (based on googling, it appears to be a rash of unknown etiology called pityriasis rosea, possibly triggered by virus or bacterial infection).

I have another appointment tomorrow with my GP. At this point, I am at a loss as to what to pursue next or what to suggest. I'm sick of doctors acting like this is in my head. I'm unable to consistently even walk for exercise, or even to be certain of doing household chores when I have 'flares's. 

Here's what I know:

I have 2 confirmed autoimmune things: Grave's disease antibodies and autoimmune hair loss.

I also have elevated prolactin, which can act as an autoimmune stimulator.

I have a rash that could be virally triggered, or autoimmune-triggered

Blood work has show intermittently elevated B6, which can be nerve-toxic and could be causing some of my tingling and parasthesias, though probably not my muscle weakness and tremor. Neverthless, I have stopped my once per week B-complex and all other vitamins except D with calcium a couple times per week if I haven't gotten any sun.

I definitely do not have myasthenia gravis. I most likely do not have autoimmune muscle disease, unless the flares are coming very infrequently).  I have normal TSH and free T4 at the moment.

Chest X ray indicates I (most likely) don't have lung cancer, pneumonia, sarcoidosis, or tb.

What the hell do I pursue now? 

Am I having periodic thryoid inflammation dumping hormones that my blood tests have missed? Could I have throid nodules (which an x ray wouldn't have spotted)?  Why is my chest cartilage so damn inflamed (it's been 10+ weeks at this point).  Why does my voice keep cracking and going hoarse and why doesn't anyone care?  Should I go back to neurologists and request a spinal mri and tap? Or is multiple sclerorosis truly unlikely given the clean brain mri last summer (prior to all these recent symptoms?). Could this be a systemic viral infection of some sort, like mono only with different presenting symptoms? Could it be metabolic, like Addison's? Could it be an autoimmune vascular disease or connective tissue disease, presenting weirdly?

Should I request a referral to a rheumatologist?

I mean, seriously, wtf should I look into?  I'm already looking to get a different endo. 

So much money spent since Xmas, and so few answers!  I'm sick of being sick!  I can take a very bad diagnosis at this point, as long as I know what the hell is going on and what to expect! The uncertainty is horrible.

Sorry that was long, I needed to vent

**I'm not a medical professional but I struggled with undiagnosed and undertreated hypothyroidism for the better part of my twenties.***
It does sound like you might have some thyroid issues going on.  Unfortunately, many drs are not well versed in the nuances of thyroid diagnoses and treatments.
First,you may want to look at the actual lab values for your thyroid panels.  Many patients find they are symptomatic even with their TSH in 'normal' range.  free T4 and free T3 values are usually more telling but a lot of doctors don't/won't run them.

Second, you might want to check out Mary Shomon's book on living with autoimmune diseases.  It was a huge help for me. 

There used to be a forum at thyroid.about.com that was extremely helpful in support and finding doctors that were good detectives for this sort of thing.  My quick internet search says that doesn't exist anymore but it looks like there are a few other active thyroid forums that might be helpful to you.  If you haven't found a good support forum, I highly recommend you try out a few.  The folks on that old forum really helped me keep my sanity while I searched for a Dr and treatment.  It is really helpful to find your tribe that have been in your shoes.  I know there are some state specific Yahoo groups that maintain a list of thyroid friendly drs.  If you happen to be in Wisconsin, I can dig through my old emails to see if I still have the last emailed list.  Really you need to keep looking for a doc that will keep digging to get to the root cause.  I know first hand that finding a good doc is hard and went through several before I found my current one.  Hang in there. 


jooniFLORisploo

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snacky has had a similarly frustrating journey. For emotional support in this horrible journey, you might enjoy connecting with her.

Are you open to "quack" ideas for what has healed similar profiles in some other people (me included)? Or does that kind of info irritate the heck out of you?
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StarBright

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Is Lyme disease ruled out?

^also what I was going to ask.

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Well Respected Man

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How old are you OP?

I agree with looking for poisoning symptoms. I would do an elimination diet, switch to bottled water, and remove any possible environmental factors. As in, take a month in Arizona or someplace like that if you can. Does your insurance company have any one-on-one advisory service? That could be a way to break through the specialist ping pong or find a better set of specialists.

I thought it was going to be myasthenia gravis when they eye and muscle symptoms appeared, but that's been ruled out.


Mezzie

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #10 on: April 17, 2017, 07:42:43 PM »
I still don't have a diagnosis, either, but seeing a rheumatologist made a big difference in my sanity because he actually believes all my crazy symptoms are actually connected and is trying to get to the bottom of them. It's a long process when certain blood things are negative.

Once I started working with the rheumatologist, all my doctors were able to revisit my meds and I'm taking things that are much more effective now.

So... obviously, I'm pro-rheumatologist. It certainly can't hurt to visit one.

Good luck!
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spookytaffy

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #11 on: April 18, 2017, 09:16:48 AM »
I was wondering about Lyme also.  From what I've read, it is very difficult to diagnose, can hide in the body, and frequently shows up as "normal."  People can take years to finally be diagnosed while it causes all kinds of havoc.  Good luck to you!

Rezdent

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #12 on: April 18, 2017, 09:44:49 AM »
You might consider a request for genetic testing - especially for MTHFR mutations. These can interfere with your body's ability to convert some vitamins - especially B vitamins.  You could have high circulating levels of B6 but if you aren't converting it you could be deficient.  This can be treated and will make you feel much better overall.  This is a very new area of science, I was very lucky my neurologist was open to testing.  It made a big difference in how I feel.

You mentioned migraines.  Migraines aren't only nasty headaches - they can affect other things too.  I've had them for most of my life - including the achy flu-like symptoms, vision disturbances, neck/shoulder pain, joint pain, vomiting.  It took a while to connect that all of these weird symptoms were all migraine.

OTC meds or pain meds might help you ride through an occasional migraine- but they just help you survive the attack. I suggest you speak to your doctor about using specific migraine medicine.  These are not pain medicines, they aren't addicting, and they only work for migraine.  They stop the attack.

DoubleDown

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #13 on: April 18, 2017, 10:51:14 AM »
Wow, so sorry to hear you're dealing with all this. Since you're already visiting lots of doctors, here is what I would try in your shoes (I'm not a doctor):

1. Seek out experts at leading research hospitals (already recommended above). They may spot something the other docs have missed.

2. Try probiotics, just in case you have some kind of imbalance that is wreaking havoc with your system. I don't take them myself, so I'm not one of the people on the probiotics bandwagon. But given your array of symptoms, I'd try it for a few weeks and see if there's any difference. Likely can't hurt.

3. Visit a highly-recommended chiropractor. The central nervous system is, well, central to everything. Something out of whack in your CNS could cause all kinds of problems including the kind you're describing. May not bring much help, but can't hurt and there's some possibility it could bring dramatic improvement.

4. I also second the opinion above to try an elimination diet. Eliminate all toxins, dairy, wheat, etc., and eat only the most basic foods and see what happens. Slowly introduce things back into your diet one at a time and see if you identify any culprits.

5. Are the antidepressants being prescribed not because the doctors think you are depressed, but rather because they have other beneficial effects on your symptoms? I wouldn't rule out taking them unless you're 100% certain they don't have any use beyond treating depression.

6. You sure your B-12 levels are okay?
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Dulcimina

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #14 on: April 18, 2017, 11:23:11 AM »
I would find a functional medicine doctor, or at least a doctor who thinks like one. They can be in any specialty.  What they have in common is that instead of looking at symptoms and giving you drug to treat each symptom, they look for root causes and try to treat that.

I haven't been to the Shomon site in a long time, but it was the only one around when I was first diagnosed with Graves 20 years ago.  I'd recommend the Stop the Thyroid Madness site e.g. https://stopthethyroidmadness.com/2017/02/14/gaslighted/. It deals more with hypothyroid vs hyperthyroid disease, but I think there is enough similarity with the issues to make it a worthwhile read.  Terry Wahls is another recommendation http://terrywahls.com/the-high-cost-of-todays-drug-therapy-part-2-how-i-saved-my-health-and-my-money/. Her books are available at the library.

I've also been dealing with gastroparesis (13 yrs) and an autoimmune skin disease (3 years). The combination of these two things (in 2014) drove me to suicidal thoughts. Like you, I wasn't depressed. I just decided that while I could deal with the intense pain for a year or two, I couldn't fathom living like that for another 20-40 years. In addition to finding supportive doctors, I started looking into an anti-inflammatory lifestyle with their help. This included getting enough sleep (the steroids I was on messed with my ability to sleep); supplements (e.g. Vit D, magnesium, probiotics, and combination of curcumin/quercetin ); and diet (autoimmune paleo with gradual reintroduction to ID any problematic foods). I don't know that these particular things will help you, but just wanted you to know that it's not completely hopeless.

Another thing I learned was to look for 'leading indicators', a concept I took from https://petra8paleo.com/2015/12/24/biohacking-tip-7-choosing-your-own-indicators-of-well-being/. My leading indicator is rapid weight gain, like 3-5lbs overnight, or ringing in my ears.  When that happens, I'll start throwing up every meal after that.  Up to now, I have been eating gluten free to keep my gastroparesis under control. When I started paying attention to my indicators this year, it became clear that gluten free wasn't enough.  The actions that helped the symptoms, such as going for a walk, taking a lipoic acid supplement, or lowering carbs/fasting suggested I was having a glucose handling problem. Sure enough, my A1C test done in March shows that I'm now prediabetic. I guess the take home message was to keep track of symptoms  to understand root cause, and to realize that just because everything seemed to go haywire at once doesn't mean that they all have the same underlying cause. 

wenchsenior

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #15 on: April 18, 2017, 12:58:39 PM »
I want to thank everyone who has replied to me so far...it's so helpful to hear that other people are dealing with some of the same issues.   Lots of good advice and thoughts here and in some PMs to me, as well.  I did go to GP today, who thinks the chest inflammation/hoarseness/cough is due to a new strain of whooping cough that has been rampant in my city this winter. The GP himself got it, began coughing right after Xmas, got resulting inter-rib inflammation of the costoconditis/pleurisy type and just got over it 2 weeks ago. A steroid burst did nothing for him, either.  He said he's seeing other people where the inflammation and cough went for 4+ months, so for that, at least, I think I  will just try to wait it out another couple months (it's been 10 weeks approx at this point).

I ran through a bunch of possible other causes for the muscle weakness/tremors, to get his input.  We were in general agreement on everything.  He finds it strange that my Grave's antibodies are so high but thyroid stays in normal ranges, and wants to keep careful watch on it. He agrees that it would be worth it get a second opinion from an endo outside their hospital, even though mine is very well trained....any second opinion is good.  He agrees with me that the only other metabolic disorder that typically presents with weakness is Addison's, and neither of us think that is likely.  He agrees that it could be a generalized autoimmune reaction to the a virus exposure or to Lyme, and said we can test for those, but practically he said (I know this) they can't really do much for viruses usually, and I'll probably show positive for Epstein Barre and some others from a lifetime of exposure and very possibly Lyme as well, given long youthful exposure to ticks in Northern WI, but that doesn't mean they can confirm that those would be currently causing anything.

There are other possibilities: rheumatological for sure, fungus (mould, Valley fever), unknown toxins, etc. 

GP said we could keep going on a fishing expedition, but he agrees we've tested for the most statistically likely stuff and it might just be a giant money hole for me and the clinic.  He said at this point he could refer me to their rheumatology dept, but it will be another couple of months to get in.  He also said at this point he would be in favor of a Mayo Clinic referral, given the persistent variable symptoms with no obvious diagnosis.

So I said I would give the chest thing a couple months, and weigh  my options for Mayo or other avenues such as Lyme or rheumatology, etc.

All in all, I feel better about this appointment than my last few with specialists...he's not dismissing me like some of the docs I've seen have. And as my GP, he's seen and heard about lots of my weird stuff over the years (usually, I don't ask him to test for things, I've just noted or complained, and I think he's frustrated too that once we started testing nothing clear has turned up).

I need to catch up on a bunch of work that I'm behind on, but I will eventually respond to everyone in this thread. 

Again, I REALLY appreciate all the input and support.

Blonde Lawyer

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #16 on: April 18, 2017, 02:07:57 PM »
I would look at your diet, specifically trying gluten free and dairy free, including whey and casein.  I have Crohns and Hidradenitis Supperativa and both diseases only went into remission after going gf/df.  My doc actually wants me on a full paleo diet but that is more than I'm willing to do right now where I see complete relief being just gf/df.  You could try an elimination diet like the one in Dr. Junger's book Clean.

jooniFLORisploo

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #17 on: April 18, 2017, 02:17:29 PM »
wenchsenior, please don't feel like you need to respond to every post! You have plenty enough going on just dealing with your body, regular life, and medical explorations! We know you read them; we believe you that you are taking each into consideration :)

Just keeping healing, and know we are here for you (as you can see!), to offer what we can!

So great your GP is proving a sound support to you. You deserve that!!
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hoping2retire35

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #18 on: April 18, 2017, 03:00:06 PM »
not medical pro here.

I have some of the same symptoms, to a lesser degree, and family member with similar symptoms.

Avoiding the FODMAP foods helps me the most personally. I avoid sugar so much now that if I have any, even after coffee in the afternoon, I just fall asleep.  I have also read about histamine intolerance; that might cause many of your symptoms.

I think types of psoriasis can cause hair to fall out. Diet and sunshine helps a lot with that.


Wise Virgin

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #19 on: April 18, 2017, 07:01:31 PM »
It sounds to me like you are starving to death. I think I was.

I will list similar symptoms I developed about six years ago: muscle pain like flu onset, check; worsening with barometric change (onset of storms or damp cold weather), check; symptom variation with hormone fluctuation, check; IBS "tender digestion" symptoms of one kind or another all the time, check; bizarre hunger with binging, check; slow peristalsis, check; loss of muscle mass, check; infection-like symptoms with no identifiable infection including weird fevers and chills, check; electric zaps, oh my yes check; voice hoarsening and loss of singing ability, check; red inflamed eyes, check; hair loss by the scary handful, check; dark eye bags, check; poor balance, weakness, tremors, interior sensation of shaking, check; racing heart, check.

I believe what was wrong with me was starvation caused by a compromised digestive lining. I ate, but my food couldn't be absorbed. I was desperate like you sound and was even contemplating my own mortality.

What I did was the South Beach Diet. Its initiation phase has no sugar, no fruit, no grain, no potatoes, no full-fat dairy. Within four days the pain in my leg muscles went away and I had a rush of well-being. I have followed a strict gluten-free diet for several years now and I also avoid things like brown sodas (caramel coloring).

I am nearly entirely well. The only remnants of that scary disorder are "tender digestion" with sensitivity to chocolate and all spices, and achiness at barometric changes.

The muscle pain and wasting I think was caused by muscle breakdown as the digestive lining stole amino acids to repair itself (glutamine).

The herb licorice was helpful to warm the digestive tract and gently encourage peristalsis.

I had to change drastically to get well. No stress on the digestive system, no restaurant food, no fast food, and so on. It did work though. Over time I got well.

I hope you do too. My best wishes for you wenchsenior.

Frankies Girl

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #20 on: April 18, 2017, 07:17:36 PM »
I just remembered reading about Chandra Wilson's daughter having serious illness that went undiagnosed for years: https://www.yahoo.com/celebrity/greys-anatomys-chandra-wilson-opens-131452581.html

Could ask about mitochondrial dysfunction? I read through the wiki and this may also be something to check out?
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Life in Balance

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #21 on: April 18, 2017, 07:40:12 PM »
I went through a scary undiagnosed mystery autoimmune illness for years also.  I went to the Mayo Clinic in Rochester and they were on the right track halfway through the first day.  I cannot say enough for their team approach.  Although I was originally there to see an endocrinologist (I have Graves also), I saw ALL the specialists that week (e.g. allergist, cardiologist, pulmonologist, rheumatologist, gastroenterologist, etc).  The doctors were amazing and really took time to listen to my history, review my records, and, very importantly, reassured me they would figure it out.  I cried in the office when the doctor told me that and cried again a couple days later when her initial guess/diagnosis was confirmed (Celiac disease + other food intolerances).  My symptoms were NOT the classic symptoms at all and they still tracked it down.  If your doctor is suggesting a work-up at Mayo, don't hesitate!!  Please!  It is really the most amazing place. 

I also want to say, hang in there.  It is hard being sick without knowing what's going on.  But once they find what's causing your symptoms, you'll start to get your life back. 

Abe

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #22 on: April 18, 2017, 08:36:18 PM »
Have you been evaluated for Crohn's disease or celiac disease by endoscopy? Your symptoms are very concerning for severe malnutrition. Skin rashes, muscle wasting, joint pain, headaches, vision changes are all seen with severe malnutrition of various causes . It's not clear exactly what's going on but your symptoms are clearly concerning enough that a second opinion is needed soon. I would see a gastroenterologist at an academic center specifically, but a panel of doctors need to sit down and discuss your case. I doubt anyone by themselves will figure it out alone.

jim555

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #23 on: April 18, 2017, 08:51:06 PM »
Have you had an anti-CCP test?  This is what the Rheumatologist would order to check for RA (among other tests as well).

shelivesthedream

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #24 on: April 19, 2017, 07:56:22 AM »
I'll admit you have way more symptoms than I had, but there is enough overlap that makes me think this could be a good idea for you. Look up the FODMAP elimination diet. Eliminate all the foods for 12 weeks, then reintroduce one at a time over the course of three days and see if you get symptoms.

It's not a cure-all, not everyone has problems with these foods, but it's a few months and could make you feel better forever if you discover a food which is causing you problems. The list includes all sorts of tricksy things like different fruits and kinds of artificial sweetener. It's really worth a go.

My initial symptoms were totally overwhelming tiredness and joint pain. The gastro stuff only became problematic about eighteen months after I first started having problems (which I think was after a bad bout of flu) so I was being tested for stuff like junior rheumatoid arthritis - when the problem was that I couldn't digest certain foods.

The elimination diet is pretty boring (I ate a lot of salmon and white rice) but after about six weeks I felt like a new person and after ten weeks I felt amazing. It was very apparent to me when I reintroduced onion and garlic that they were the problems - and of course my symptoms had been so hard to pin down because they are in everything! But the FODMAP diet changed my life - and, as others have said, it gave me HOPE. I can't avoid onion and garlic completely if I ever want to eat food prepared by anyone else but at least I KNOW why I feel bad the next morning and that it will only last a few days. I am not looking at livin in a fog of exhaustion for the rest of my life.

Anyway, I would really recommend that you have a go. I'd make an effort to take a multivitamin and plan varied meals just in case it's nothing to do with FODMAPs but as far as I can see you have nothing to lose.

DavidAnnArbor

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #25 on: April 19, 2017, 08:37:15 AM »
Some report helminthic therapy works to resolve autoimmune disorders.

The Happy Philosopher

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #26 on: April 19, 2017, 09:05:22 AM »
I will echo what many have said here, diet may be contributing. The only way to know for sure is to eliminate things and slowly add back. My body feels much better when I'm not eating much gluten. For others it could be dairy or soy. I went hard core paleo for a few months and never felt better. I had to finally quit because I was losing too much weight, but the gluten free thing stuck.

At a minimum I would eliminate gluten, dairy and try a low FODMAPs diet for a month or so and see what happens.

Antidepressants are massively overused in my opinion. If you are not depressed don't take them. Be warned, a small percentage of people have strange neurological symptoms when going off them. If you stopped an antidepressant and had temporary neurological symptoms they may be related. Most docs are unaware of this.

PS: All this stuff is my opinion. These are things I would try if I were you, but I'm not you. Do your own research and work with your docs.
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wenchsenior

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #27 on: April 19, 2017, 10:20:16 AM »
By topic replies to all this great advice:

1) Re antidepressants....I have never taken them but have no issue with taking them if I thought depression were my main problem.  I know they are sometimes also prescribed for chronic pain, and I have considered that but not done it. I want to avoid them right now only because they cause side effects that could further confuse my situation.  Therapy would be fine, I just am not sure I want to spend time and money on it at the moment.

2) Re: thyroid...suspect thyroid has been playing a role, perhaps because of suboptimal function FOR ME, or possibly a conversion problem.  My TSH and free T4 have always run within the new approved normal range.  Interestingly, my TSH gradually rose over the years from around 1.0 to mid/upper 2s, then took a massive drop to 0.6 right around the time my vision/heart racing problems started last summer.  Then it jumped back to midrange.  Suspect that was a Grave's type flare that just didn't push my TSH out of low normal.  I am not sure what my freeT3 is doing, and am going to start asking for that to be regularly checked also.

3) Re: am I open to 'quack ideas'? Well, I'm trained as a scientist, so it depends on how you define 'quack'.  Quack like crystal healing? No.  Quack like 'leaky gut' (a conceptual idea that hasn't been objectively defined by the medical community)? Yes, I'm open to investigating stuff like that.

4) Someone asked about age and toxin exposure. This is a possibility.  I'm in my mid 40s and have lived in the heart of cotton country for more than 15 years, and the soil the city is built on is riddled with organo-phosphates, etc. It seems like everyone we know has thyroid issues here.  So I could def be triggered by something.

5) Re genetic mutations, mitochondrial, and also potassium processing disorders that cause severe episodic muscle weakness.... these are possibilities, but they are rare, and I feel like they would have shown up sooner, given my age.  Given that my mother had/has 2 diagnosed autoimmune illnesses, plus a possible third one and there are some autoimmune things on the paternal side as well, it seems like autoimmune is probably the root of all of this crap, statistically speaking.

6) Re: migraines being responsible for pain episodes. Yes, I think so too. Lots of info online seems to suggest that subtypes of migraine present with referred body pain, etc.  I thought as a kid that my headaches were tension, then when painkillesr stopped working so well,  I thought they were sinus (even though I have no sinus infections)...I thought so because pseudo-ephedrine or nasal steroid spray were the only thing that helped to keep them from progressing. When I get a headache it feels like my eyes are going to explode out from the head pressure. Laying flat or bending down exponentially worsens the pain, so when they come on, I can't lay flat or bend down for 18-20 hours' duration...I sleep propped against a wall or a pile of pillows.  Headaches are usually stronger on one side of my head or face, and have a severe throbbing quality.  I discussed migraines with neuro intern, but she seemed to think that migraines always resolve by lying flat in a dark room and going to sleep, thus I couldn't be experiencing migraines. Nevertheless, she offered migraine specialty drugs.  I declined when she told me they can increase risk of kidney stones, which run in my family. I do have beta blockers, and am going to try taking low dose/extended for a few days around the typical hormonal 'danger' zones to see if it helps. I'm also going to take calcium/mag and riboflavin (rec'd by my endo) in those windows of risk.  I can handle 2-3 migraine type pain episodes per month, but last Oct/Nov, I had about 15-20 over 2 months. If I worked a regular job, I'd have lost it by now.  I'm hoping dealing with the rest of my unid'd problem will help headache frequency.  Menopause might help as well, but that could be years away yet.

7) I do take a probiotic several times a week, started after all the antibiotics I took for the utis (I hope I've resolved that issue at least...:crosses fingers:)  My B12 shows normal, but I understand taking it with folate can obscure deficiencies.  I will keep monitoring B6/B12 while off supplements, to see what shows.

8) Re: pain management/chiro/massage (esp rolfing/deep tissue massage, etc).  Yes, I do find very hard/painful, trigger-point-oriented massage can definitely help with my pain episodes/shorten the headache duration/lessen intensity.  I am going to look into a specialist massage therapist... seems worth the money, and I won't be bothering my husband constantly about the spots I have trouble reaching myself.

9) Helminths/parasites.  This is a possibility, given my longstanding youthful outdoor exposure and recent regular work in the Caribbean for a decade.  I think down the list, but definitely possible.

10) wisevirgin, WOW, you sound SO similar to me.  To all of you who mentioned focusing first on digestion/bowel health:  I didn't even think about literal starvation!  I mean, stupid, right...with longstanding weight loss and muscle deterioration?  I think it's because I do eat despite my lack of appetite, and I don't eat a lot of crap, so it didn't connect in my head.  I have tried to add calories to maintain weight.  But I wonder if my digestive system really is the root of everything, given that the precipitation of all of this followed a mysterious gastro ailment in late 2011. 

I have NOT had a GI workup partly because I figured celiac/crohn's would present with pain and diarrhea, rather than slow digestion and constipation.  But now I wonder, esp given the development of rashes.  The other thing is, I've taken otc painkillers almost daily for YEARS...I used to take more than rec'd until I got an ulcer in my early 30s. Since then I really try to stick to proper dosage, but I wonder if my gut lining is just shot and reacting to everything? Plus, of course, regular painkillers can cause rebound pain, which creates a cycle.
It's always such a relief when I've gone a couple weeks with minimal pain, because I don't have to take them. But then the 'migraine' type thing will flare again, and off I go taking rotational tylenol and nsaids for days and days on end. UGH.



I think, based on all your advice, that an autoimmune diet protocol is probably the most practical next step I can do myself, along with maybe visiting an allergist and getting a GI work up.






jooniFLORisploo

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #28 on: April 19, 2017, 10:32:31 AM »
Quote
3) Re: am I open to 'quack ideas'? Well, I'm trained as a scientist, so it depends on how you define 'quack'.  Quack like crystal healing? No.  Quack like 'leaky gut' (a conceptual idea that hasn't been objectively defined by the medical community)? Yes, I'm open to investigating stuff like that.

That was me :)    Yes, by 'quack' I was referring to the latter type of thing, which sometimes I get yelled at for suggesting. Folks who have not been yelled at for that kind of thing did an awesome job sharing that info, though :)

I went from severe, wild, changing, awful, extreme symptoms to total wellness via such steps. Thrilled that you're looking at stuff along those lines as your next move!
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Dollar Slice

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #29 on: April 19, 2017, 10:40:09 AM »
In re #6, I think pseudoephedrine is a vasoconstrictor, so it would make some sense that it helps your migraines. Triptans and caffeine (both of which are given for migraines) are also vasoconstrictors. If you haven't tried caffeine, it works for me sometimes and has fewer side effects than triptans or pseudoephedrine. I keep mini cans of Coke in the fridge just for migraine treatment. I also have triptans but they make me feel so bad for a few hours that I can't go to work, so it's a last resort.

I hope you find some kind of solution. My mother and I both have similar sorts of "huge list of symptoms, no obvious diagnosis" problems as well... it's very frustrating/depressing.
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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #30 on: April 19, 2017, 10:48:27 AM »
I have NOT had a GI workup partly because I figured celiac/crohn's would present with pain and diarrhea, rather than slow digestion and constipation.  But now I wonder, esp given the development of rashes.  The other thing is, I've taken otc painkillers almost daily for YEARS...I used to take more than rec'd until I got an ulcer in my early 30s. Since then I really try to stick to proper dosage, but I wonder if my gut lining is just shot and reacting to everything? Plus, of course, regular painkillers can cause rebound pain, which creates a cycle.
It's always such a relief when I've gone a couple weeks with minimal pain, because I don't have to take them. But then the 'migraine' type thing will flare again, and off I go taking rotational tylenol and nsaids for days and days on end. UGH.



I think, based on all your advice, that an autoimmune diet protocol is probably the most practical next step I can do myself, along with maybe visiting an allergist and getting a GI work up.


Just to add something - after we figured out it must be something GI-related after my wide and confusing array of GI symptoms began (but very little pain) I had a colonoscopy and they said I had a very healthy-looking bowel. I was tested and they said I had no major allergies. Then I did the FODMAP elimination diet and realised I could not digest onion and garlic (intolerance rather than allergy) and since I have all-but-eliminated them from my diet I feel worlds better - honestly, like a different person. If you think it's related to your diet then I would be wary of having further GI-related tests unless there is a specific reason. You cannot *see* an inability to digest a certain food. (Though the fact that I started feeling a little better during the pre-colonoscopy cleanse when there was no food in my bowel was a bit of a hint.)

Also, I looked it up and apparently I misremembered - it's 8 weeks of elimination, not 12! You don't *need* to see a dietician for the FODMAP diet but it can help to get the official literature and not the "weight loss through FODMAPs!" crap on the internet. http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx

msmargarita

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #31 on: April 20, 2017, 08:36:29 AM »
Hello, I have been a recent lurker and decided to register after reading your post.  I know how incredibly frustrating it can be to know something is wrong with your body, and feeling like doctors are missing the mark.  Has anyone looked at your parathyroid function?  I was diagnosed with hyperparathyroidism after years of many of the same symptoms - muscle/joint pain, migraines, UTI issues that turned out to be caused by kidney stones, fatigue, depression, and hair loss.  All of this was caused by hypercalcemia due to hyperparathyroidism.  Mine turned out to be primary hyperparathyroidism, but there is a known high prevalence of secondary hyperparathyroidism in people with Graves' disease. 

I hope you find some answers soon. 
« Last Edit: April 20, 2017, 08:38:11 AM by msmargarita »

Poundwise

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #32 on: April 20, 2017, 10:31:55 AM »
Oh my goodness, I hope you find out the cause soon!  In case you are being poisoned by something in your environment or diet, have you tried staying in another place for an extended period of time? I suppose your husband would show some of the same symptoms if it were something in your environment, though being larger than you perhaps it would take more time to show.

https://rarediseases.org/rare-diseases/heavy-metal-poisoning/

Abe

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #33 on: April 20, 2017, 07:03:10 PM »
You are right that Crohn's enteritis usually is painful, so that's less likely. However a lot of the other malabsorption syndromes are painless and caught only after significant nutrition issues arise. I am not sure that the thyroid issue is a major cause, probably just a consequence of the underlying problem. Thyroid disease rarely has clinically obvious problems if the levels are in the close to normal range. Hyperparathyroidism is something to consider, but again would be unlikely if your calcium is in close to normal range also.

I'd try Ensure or Boost to see if that helps with your muscle loss. They're easily digested even in people with severe malabsorption syndromes.

Wise Virgin

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #34 on: April 21, 2017, 09:52:02 AM »
For your consideration, or possibly to help anyone reading this thread, I can tell you the difference between a legitimate craving for something your body needs, and an obsession your body has with the thing that is killing it:

If you think, "My, I think a bit of cheese would do me good. I haven't had any really good cheese in awhile." You picture yourself having one piece of cheese. You think how good it would make you feel. You seek out the cheese, eat the cheese, maybe have a second piece of cheese. You might eat cheese again tomorrow. The rest of the cheese is forgotten in your refrigerator. This is a legitimate craving. Your body wanted calcium or something else from that cheese and now it is satisfied.

If your thoughts about cheese are overwhelming and do not bring you any pleasure, only a sick hope that by giving in you will stop the incessant demands of your body; if you eat not good cheese, but crappy cheese, and multiple kinds of it, and load up with cheese so it dominates your meals to a ludicrous extent; if you eat cheese to the exclusion of all healthy foods that a reasonable digestion would prefer so other nutrients are crowded out and neglected; this is an obsession. You now know what is making you sick. It's dairy.

For me I was obsessed with pastry. Wheat and sugar were making me sick.

A funny little note, if you change your diet, and have a long strenuous dream that you cleaned house all night long - that is a very good sign. You are getting well.

jooniFLORisploo

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #35 on: April 21, 2017, 10:02:38 AM »
Gosh you set that out well, Wise Virgin!! +1 to all of that!
I'm FIRE: Financially Intact, Rejuvenating Everyday

Wise Virgin

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #36 on: April 21, 2017, 10:33:58 AM »
After a day or two mulling over wenchsenior's original post, it seemed to me so many of the mystery symptoms with no apparent cause had to do with exits from the body - both the usual ones, and some unusual ones: skin, throat, lungs, eyes, sinuses, ears.

I think when her colon is working properly again these oddball symptoms will improve or resolve.

Regarding starvation from malabsorption: the body developed evolutionarily to protect its members in a strict hierarchy. Brain and heart first; major organs; digestive lining; lungs and excretory organs (kidneys). Bones, large muscle groups, hair, skin, some kidney function, some lung function, some sight hearing taste and feeling function - these are things the body is willing to sacrifice to sustain the organism's basic ability to function and obtain food and water while it hopes for better days. I think this is why it takes so long for damage from malabsorption to show up. It is masked by the body's willingness to sacrifice and not complain.

MsPeacock

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #37 on: April 22, 2017, 12:24:26 PM »
A rehumatologist was the person who finally nailed down WTH was wrong with me - after being shifted through pain specialists, ortho, neuro, and PCM. The problem w/ people like ortho and neuro is that they really focus on one system and I think are less trained on evaluating diseases that present with a complex variety of symptoms across multiple physiological systems.  As it happened, I have something that started at age 40 that most people who get it (which is a small number) have problems in their 70-80s. There is almost no research literature on the issue because it occurs so late in life that treatment isn't much of a concern.

My other thought would be an infectious disease specialist.

From what you describe I think you are far outside the skill level of a GP/PCM.




LifeHappens

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #38 on: April 23, 2017, 01:30:38 AM »
I am so sorry to hear about your medical troubles. There are several people in the journal section dealing with tough to diagnose conditions, so perhaps some networking with them could be helpful.

I second the suggestion of getting tested for mitochondrial disease - if all else fails. I have a family member with a diagnosis of an extremely rare condition. Many of your symptoms sound similar or identical to hers including weight loss, IBS symptoms, migraines, eye twitches and even the voice issues. Unfortunately there is almost no medical treatment beyond superdosing of some vitamins, so it's a diagnosis of last resort. I sincerely hope this is not your situation.

Roots&Wings

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #39 on: April 23, 2017, 07:32:50 AM »
I also went through a very frustrating period of "unknown" disease with some similar symptoms around digestion, migraines, muscle pain, fatigue. After exhausting all conventional medical options, what ended up working in my case was changing diet and Atlas Orthogonal chiropractic. The central nervous system is central as Double Down mentioned, which might sound like crazy quackery (it did to me coming from a family with several medical doctors, but I was desperate to try anything). Throwing out there as another possibility. Good luck!

ElleFiji

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #40 on: April 23, 2017, 07:52:13 AM »
I haven't been commenting, because other people have offered so many different options. I am very concerned that it does sound like you're starving, so figuring out that piece is crucial to your survival.

I did want to offer an alternate viewpoint regarding antidepressants - when your body has been stuck in a pain cycle, and without refreshing sleep, your brain chemistry changes. Some of the changes can be helped with antidepressants, at least enough to get you rest, so that you and your doctors can help to figure out which symptoms are your central symptoms.

Last time I was stuck in a giant pain and anemia and sleep deprivation cycle, I begged my doctor for antidepressants and begged friends for marijuana. Neither happened. Opiates would let me get rest, which improved quality of life for a few days, but I wasn't interested in using them for long. Taking St. John's wort for a few weeks helped regulate my sleep. Doubling and tripling my iron supplements helped my anemia, and I was able to get back to my normal, ongoing, undiagnosed levels of fatigue and pain and low ferritin.

purple monkey

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #41 on: April 23, 2017, 08:39:30 AM »
The neuroboards might help you:

https://www.neurotalk.org/

These folks have many unusual symptoms and diagnoses.

So sorry for your suffering.

raven2963

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #42 on: April 23, 2017, 09:11:32 AM »
Everyone of your symptoms is related to thyroiditis, in your case it sounds like hashimoto's.  Head over to stopthethyroidmadness.com.  There's a wealth of information there. 

Most endo's don't have a clue with this, don't waste anymore time with them.  The thyroid level ranges are currently far too wide and unless you go to a knowledgable doc, they will tell you "your labs are fine, it's not your thyroid." 

Good luck

Cranberries

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #43 on: April 23, 2017, 09:54:01 AM »
Everyone of your symptoms is related to thyroiditis,

Most endo's don't have a clue with this, don't waste anymore time with them.  The thyroid level ranges are currently far too wide and unless you go to a knowledgable doc, they will tell you "your labs are fine, it's not your thyroid." 

Good luck

+1, except I'd qualify it slightly to "Every one of your symptoms sounds like it could be thyroiditis."

MMMaybe

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #44 on: April 25, 2017, 01:06:26 PM »
I had a weird auto-immune illness for a long time. I tried a lot of things but addressing the compromised gut lining/digestion issue, literally changed everything. I had suffered from a range of symptoms, including digestive issues like stomach ulcers for years and I think I was malnourished. Something to google might be leaky gut. Also, look into the relationship between auto-immune issues, diet and the gut. It would explain the theory of why some people end up with autoimmune issues.

This is a really helpful introductory clip from You Tube. The woman giving the talk is a gastroenterologist who started to understand the link between diet and autoimmune illness, when some of her Crohns patients mysteriously got better. https://m.youtube.com/watch?v=pDBI9txA-W0

A good diet to go on is the Whole 30/paleo. That should cut out most of the known allergens and get your blood sugar levels steady-a high carb diet is really detrimental to me. Take a look at the Mark's Daily Apple forum. Plenty of folks that have turned their lives/health around on there.

I target prebiotics and probiotics in my diet-the aim is to encourage a good balance of bacteria in my gut. We also eat a lot of grass fed meat with cartilage or on the bone. Good for the wallet (cheap) but very healing for the gut lining.

We don't eat a "normal" diet by any "normal" standards but its a whole foods based diet, mostly made at home. We feel really sub-par if we eat too much normal food. I have also removed most of the household chemicals from my life and really simplified all toiletries etc.

Doctors are liable to want to dose you up on meds and pour scorn on all of this. However, this diet is exceedingly healthy and no doctor could complain about it :) And it WORKS!

shelivesthedream

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #45 on: April 25, 2017, 02:46:35 PM »
I have also removed most of the household chemicals from my life and really simplified all toiletries etc.

Doctors are liable to want to dose you up on meds and pour scorn on all of this. However, this diet is exceedingly healthy and no doctor could complain about it :) And it WORKS!

I also have a friend who had a long-term skin condition and happened to switch laundry detergent (to one marketed as eco-friendly, I think). His skin condition cleared up. Just on the basis of trying everything, you might as well try the suggestion above.

I'm also of the opinion that if stuff works, then it works, even if it can't be explained by doctors - and that getting you better is the important thing, not finding something scientifically explicable. Try stuff out. But do give it time - I think a month is the absolute minimum. Two months trial is better.

neverrun

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #46 on: April 26, 2017, 06:41:28 PM »
I'm also not a doctor.  I'm giving this advise assuming you live in the USA.

I would think about second opinions from experts in autoimmune disorders possibly outside of your area unless you live near one of the famous hospitals/doctors and are seeing them now.  I have a co-worker who was luckily diagnosed with an autoimmune disorder early stage.  We were working in Georgia at the time.  The doctor practiced at Emory and consulted with the CDC.  My co-worker might have been written up in a medical journal by now, the expert doctor had never seen whatever he has so early in onset.  I would look at neurology, again a friend suffered for years due to what turned out to be conditions that originated from a concussion she received in HS.  She thought she was dealing with who knows what until she got the proper diagnosis. 

Freeme

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Re: HELP. I need advice re possible autoimmune diagnosis? Ignore otherwise.
« Reply #47 on: April 26, 2017, 08:55:47 PM »
This type of issue should be handled by a group of functional medicine drs. They look for the root cause of your issue. Typical MD's will just sent you to multiple specialists but when you have that many issues going on all systems are struggling. I go to a medical center called root cause medical clinic in SUNNYVALE CA. they are a destination clinic meaning they treat people all around the country and world. They have a MD, chiropractor, nutritionist, physical therapy that all work together on your case. It is not cheap but my insurance did cover it as out of network. You can look on the functional medicine webpage for a functional medine dr near you. It is a journey and I have changed my food, excercise levels, supplements just about everything. I am even leaving my job to retire earlier than planned to eliminate a very high stress job. i hope you are able to find some relief. Dr. mark Hyman's and Amy Myers both have good books on this topic.