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Autonomic neuropathy, autoimmune disease - help!

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Old 01-15-2012, 01:35 PM   #1
whitechinacat
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Default Autonomic neuropathy, autoimmune disease - help!

Hello! I've been reading through past threads and finding some very useful information. I wanted to introduce myself and ask a couple questions...

I'm a 30 year old woman with a mystery autoimmune disease. The only thing I've been diagnosed with is small fiber peripheral neuropathy and it's definitely my most bothersome condition/symptom. I know it is caused by an underlying disease process, but no one can figure out what that is so it isn't currently being treated. I am seeing my neurologist again on Feb 24 and would like to have some intelligent questions to ask him. I like the neurologist and he is willing to investigate my symptoms, but when my bloodwork showed a positive ANA (indicating autoimmune disease) he passed me on to the rheumatology department and I only see him every 6 months or so.

I'll try to be brief with my history, but there's a lot to say! I was healthy until 2 years ago when I was pregnant with my daughter. At first I noticed some patches of tingling on my back that would come and go, as well as the odd sensation of water washing over my skin. Then I started getting heart palpitations and bouts of lightheadness and vertigo. Then bouts of diarrhea that would be preceded by intense tingling in my legs and a feeling of being very cold and shaky. One day I had an episode where I couldn't think clearly or put the words together to speak, then I got tingling on one side of my face and one arm, and both legs. I felt weak and tired and strange. The only reason I didn't go to the ER was because these are like the aura symptoms I'd had before with a migraine and I assumed that was happening again. This time I never got a headache, but the symptoms disappeared after about 3-4 hours. I saw my doctor who ran tests to rule out a TIA. The MRI of my brain, EKG, echo, and bloodwork were all normal so she said it probably was an atypical migraine.

After my daughter was born I felt great for about 3 months, then I crashed. One day I was using a pair of scissors and my thumb went numb and didn't recover for MONTHS. I started getting more episodes of tingling, especially in my feet and lower legs. More dizziness, bouts of diarrhea with leg tingling and shivering, and migraines (left side headache plus tingling in my face and blurry vision). It got worse and worse until I ended up visiting the ER thinking I was having a stroke or something. However, all the symptoms come and go and generally don't last more than a few hours at a time (though they will return later). The weather was becoming colder at this time and I also started to notice that my feet were not just tingling and numb but also felt very cold to the touch and were a grey colour with blotches of black, white, or purple. I also suddenly started getting bad heartburn (GERD) and mild swelling in my hands and feet in the mornings.

I saw a neurologist who requested another MRI of my brain and the whole spine. It was normal. He also did an EEG which was normal. The tests he did to see if I could sense vibration and temperature in my legs were abnormal and he told me that I had polyneuropathy. I had a NCV/EMG which was normal. He ran a lot of bloodwork and discovered the positive ANA (1:640 speckled) along with low ferritin and pre-diabetic blood sugar levels (A1c of 6.1 but I passed the 3-hour GTT). I was referred to a rheumatologist.

That was a year ago and I still have no answers. I take Nexium for heartburn, but no other medications. I take an iron supplement but my ferritin is not increasing. I also take a multivitamin, vitamin D, B6 & B12 & Folate, and fish oil.

Interestingly, over the summer months my neuropathy all but vanished. I felt sure that this meant that the neuropathy was caused by lack of blood flow to the nerves since cold weather causes my blood vessels to spasm closed and warm weather allows them to remain open, but perhaps there is another explanation. From May to September I had NO tingling except the odd bit in my face along with a headache and I felt much less fatigued. I had none of the episodes of tingling, weakness, dizziness, diarrhea, extreme cold sensations, etc. either. In October on the first cold day of the year, it all came back. The GERD, hand/foot swelling, palpitations, and some muscle pain and stiffness did not go away over the summer.

Sorry this is so long! To wrap up, my rheumatologist has no idea what I have. She's run all the antibodies for the connective tissue diseases and come up with nothing twice. My ESR/CRP have always been normal. I've been tested for liver/kidney function, thyroid disease, cryoglobulins, and lots more. All negative. This winter I've had a lot of muscle pain (like the flu), muscle spasms in my calves at night, lots of tingling and numbness all over, intense dryness and pressure in my sinuses and behind my eyes, plus the dizziness/tingling/diarrhea episodes. My rheumatologist speculated that I may have autonomic neuropathy because of these episodes as well as my heart palpitations and low pressure and feeling cold all the time. I've been referred to a gastroenterologist to investigate the chronic diarrhea. I've also been referred to an endocrinologist because I have PCOS (polycystic ovary syndrome) and had thyroid surgery years ago - the function has always appeared normal, but I only have half of the gland.

Anyway, that's what's going on with me! Some days I feel okay and can function pretty normally (though I never feel completely normal) and others I am just miserable, scared, and feel like I can't go on like this any longer. Any suggestions on what to ask the neurologist? Testing? Should I ask him to try one of the neuropathy drugs I've heard about like Gabapentin or Neurontin? Cymbalta? Lyrica? I know that treating the underlying condition is most important, but since no one knows what it is...

Thanks!
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Old 01-15-2012, 02:02 PM   #2
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Well hello and welcome to NeuroTalk or nt for short! You chose well when you found this site. Shortly, I am sure, you will hearing from the senior members and "expert" advisors. I was amazed at the amount of knowledge the poeple at this site has to offer! And the emotional support as well (and often more important) is incredible. The amount of empathy you will recieve is unlike any where in your outside life. Here, for any one thing you have gone through or will go through there will be SOMEONE who can commune with you about it! You will receive a great deal of care here and won't want to leave! So welcome and I hope someone can lead you to the correct answer (I'm not one of the experts )!
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Old 01-15-2012, 04:25 PM   #3
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Sounds very complex..

Autoimmune issues typically go into remission during pregnancy, because all the hormones go up and especially cortisol, you see improvements in things like MS and Rhematoid arthritis etc.

Then when the pregnancy is over--- boom... it all comes back.

However, many of your symptoms sound like low thyroid to me.
The Cold intolerance, tingling, PN symptoms, etc.

Also there is a condition called carcinoid, which is an elevation of serotonin in the body secreted by tumors in the GI tract. It causes episodes of diarrhea, and tingling flushing of the skin.
Doctors can test for this if they think of it...because it is considered "rare".
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Old 01-15-2012, 04:45 PM   #4
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Hi, I am wondering since you have a positive ANA you gastrointestinal problems may be Crohn's disease. Crohn's is an autoimmune disease. I am wondering why you had thyroid surgery. Why was there no need for thyroid medication. If it has been a year since the blood work request that the doctor repeat them all. See what your A1C comes back as. Diabetes is a cause of neuropathy. Also, if your ferritin remains low it could be the cause of the feeling cold all the time. Low iron can cause that. Without going into detail low iron can also cause low levels of O2 in the blood which can cause lightheadedness. As for medications, I think is going to depend on how the tests come back. I take Cymbalta and have gotten some very good results with that. Good Luck and Welcome to the site!
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Old 01-15-2012, 04:55 PM   #5
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Originally Posted by mrsD View Post
However, many of your symptoms sound like low thyroid to me.
The Cold intolerance, tingling, PN symptoms, etc.

Also there is a condition called carcinoid, which is an elevation of serotonin in the body secreted by tumors in the GI tract. It causes episodes of diarrhea, and tingling flushing of the skin.
Doctors can test for this if they think of it...because it is considered "rare".
Thank you! Yes, I've wondered about my thyroid. When I was 17 I had half of it removed because I had a nodule on it that was pre-cancerous. Following the surgery and several times a year since then I have had my thyroid levels (TSH, T3, T4) tested and they have always remained normal so there's been no need to supplement. However several members of my family have autoimmune thyroid disease (Hashimoto's) so I always think of that. My levels were tested very recently (maybe 6 weeks ago) and were normal. I don't have a copy of the results though, and I know that some people say that the guidelines for diagnosing hypothyroid aren't sensitive enough. I am getting a referral to an endocrinologist (the appointment isn't until April 5) so hopefully she will be able to advise.

I do have PCOS and thyroid issues and insulin resistance (though not diabetes yet) so I bet the endocrine system is playing a role here... I just don't know what it is, and my doctors don't know either!

I've haven't heard much about carcinoid. I think it's a tumour of the adrenal glands? I imagine that could be investigated through an endocrinologist as well?

Thanks again for your ideas.
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Old 01-15-2012, 05:03 PM   #6
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Hi, I am wondering since you have a positive ANA you gastrointestinal problems may be Crohn's disease. Crohn's is an autoimmune disease. I am wondering why you had thyroid surgery. Why was there no need for thyroid medication. If it has been a year since the blood work request that the doctor repeat them all. See what your A1C comes back as. Diabetes is a cause of neuropathy. Also, if your ferritin remains low it could be the cause of the feeling cold all the time. Low iron can cause that. Without going into detail low iron can also cause low levels of O2 in the blood which can cause lightheadedness. As for medications, I think is going to depend on how the tests come back. I take Cymbalta and have gotten some very good results with that. Good Luck and Welcome to the site!
Thank you, hopeful! Yes, I guess Crohn's is a possibility. I don't have any stomach pain though... just the seemingly random bouts of diarrhea. And every time I've been tested for inflammatory markers they have been very low - I think they'd be high if I had a Crohn's flare up? I don't know a lot about it, except that my neighbour has it along with colitis and is in a lot of pain.

I detailed my thyroid history in my response to Mrs.D (above). It is possible that my thyroid is playing a role.

I have had testing for diabetes - a 3-hour glucose tolerance test. I passed so the doctor said I don't have diabetes. However I still have a high A1c. My dad is diabetic so I decided to test my own BG for a couple weeks to see what was going on. I have normal fasting levels, but I do rise up very high after meals (above 200 sometimes which is not supposed to ever happen in non-diabetics). I wonder if it's possible for someone with impaired glucose tolerance to develop neuropathy before actually developing diabetes.

Yes, I should ask about the ferritin. I'm told I'm not anemic because my hemoglobin is fine, yet the ferritin remains low (around 20) despite a year of supplementation. I'll ask my doctor.

Glad to hear that Cymbalta works for you!
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Old 01-15-2012, 05:47 PM   #7
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Yes, impaired glucose tolerance precedes diabetes, and that is when PN can start:

http://neurotalk.psychcentral.com/thread158275.html

Carcinoid is a slow growing tumor of the GI tract. It periodically secretes high levels of serotonin, which can affect mood, and motility --most commonly causes diarrhea.

http://www.carcinoid.org/

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001387/

Doctors don't think of it right away... so it is up to patients to
ask for testing for it for any complex hard to diagnose symptoms, some of which you have. Not everyone has every symptom and that makes it more difficult.

A high A1C with normal fasting, suggests, high carb large meals.
So cutting back on sugars and starches and eating smaller portions may help that at this point. The A1C typically suggests high spikes after eating, which level out later, and may become actual low blood sugars. This swinging is what leads to the PN symptoms.

You might look at the gluten free diet just in case...the diarrhea is due to that. Going GF for 3 months and feeling better may be your answer. Some testing is not really accurate for some people.
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Old 01-15-2012, 06:04 PM   #8
en bloc
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Since you mentioned "intense dryness of the sinuses", I'm curious if you have dry eyes or mouth? Sjogren's is an autoimmune disease that is not only common to include neuropathy, but 40% of patients have negative blood work. Have they run SSA & SSB for Sjogren's? If you have dry eyes or mouth, I would request they run these labs. If they are negative, then you might request a lip biopsy.

Also, did they diagnose neuropathy just from temperature & tuning fork? Did they do a skin biopsy for small fiber neuropathy? If not, it might be worth asking for.

BTW, iron deficiency anemia is also common with autoimmune disease. There are options to increase ferritin if supplements are not working. One is Ferrlecit (iron) by IV...if your doctor thinks it's bad enough. Do you know your ferritin level?
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Old 01-16-2012, 05:13 PM   #9
whitechinacat
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Originally Posted by mrsD View Post
Yes, impaired glucose tolerance precedes diabetes, and that is when PN can start:

Carcinoid is a slow growing tumor of the GI tract. It periodically secretes high levels of serotonin, which can affect mood, and motility --most commonly causes diarrhea.

Doctors don't think of it right away... so it is up to patients to
ask for testing for it for any complex hard to diagnose symptoms, some of which you have. Not everyone has every symptom and that makes it more difficult.

A high A1C with normal fasting, suggests, high carb large meals.
So cutting back on sugars and starches and eating smaller portions may help that at this point. The A1C typically suggests high spikes after eating, which level out later, and may become actual low blood sugars. This swinging is what leads to the PN symptoms.

You might look at the gluten free diet just in case...the diarrhea is due to that. Going GF for 3 months and feeling better may be your answer. Some testing is not really accurate for some people.
Thank you again! I will read more about carcinoid and see if it looks like something I should suggest to my doctor.

I was considering going gluten free for a few months to see if it would make a difference. I will also be seeing a gastroenterologist in a couple months so I can ask about testing for celiac disease. I know some people without celiac disease feel better off gluten too.

I've heard that fasting blood glucose is the last to go up when you have IGT and are developing diabetes. Yes, I could certainly look at reducing carbs/sugar. My portion sizes are good, I think. I don't have a big appetite and I'm very thin so cutting down calories and portion size probably isn't necessary. But changing what I eat is certainly worthwhile. I have a relatively good diet (vegetarian plus fish, so I eat lots of veggies and fruit, nuts and seeds, beans and legumes, tofu, whole grains, fish, and some dairy) but I do often end up eating poorly if I'm out of the house and need to grab something quickly - then it's usually white flour and sugar in the form of a muffin or scone or something.
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Old 01-16-2012, 05:18 PM   #10
whitechinacat
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Originally Posted by en bloc View Post
Since you mentioned "intense dryness of the sinuses", I'm curious if you have dry eyes or mouth? Sjogren's is an autoimmune disease that is not only common to include neuropathy, but 40% of patients have negative blood work. Have they run SSA & SSB for Sjogren's? If you have dry eyes or mouth, I would request they run these labs. If they are negative, then you might request a lip biopsy.

Also, did they diagnose neuropathy just from temperature & tuning fork? Did they do a skin biopsy for small fiber neuropathy? If not, it might be worth asking for.

BTW, iron deficiency anemia is also common with autoimmune disease. There are options to increase ferritin if supplements are not working. One is Ferrlecit (iron) by IV...if your doctor thinks it's bad enough. Do you know your ferritin level?
Thank you for your thoughts. I don't have dryness anywhere other than my nose. Occasionally my eyes too, but I just attribute that to wearing contact lenses - I've had that for years. I was tested for the Sjogren's antibodies and was negative (twice) though many of symptoms fit and I know it's possible to be seronegative.

Yes, he did diagnose neuropathy just from the temperature and tuning fork. I will ask the new neurologist if he thinks a biopsy would be advisable.

My ferritin is always about 20. I think I've seen it in the 18-22 range whenever it's been tested. The neurologist said it's not horribly low, but low enough to cause some symptoms and it would be a good idea to try to increase it. He said he likes to see a minimum of 45 and would rather it be over 65.
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