Do you get "attacks" of neuropathy? In cold weather especially?

Hello!

Do you have big flare-ups of dysautonomia symptoms? Does anyone have these issues more in cold weather?

I have been diagnosed with peripheral neuropathy. No one has been able to tell me what the underlying cause might be. I don't have diabetes though I have strong family history of both type 1 and 2. I did have a high A1c result (6.1) which my neurologist thought was high for someone without diabetes, but I did pass the Glucose Tolerance Test. I don't seem to have thyroid problems even though I had half my thyroid removed when I was a teenager due to a Hurthle Cell Tumour. I've had the function tested frequently since then, including a couple weeks ago. There are many people in my family with Hashimoto's Thyroiditis. I've had a brain/spine MRI that was normal and a normal EEG and NCV/EMG.

I also do have some sort of autoimmune disease though it has not yet been diagnosed. I assume it's the underlying cause of my neuropathy. I have high positive ANA (tested several times), indicating that I have antibodies against my own tissues, but I was tested twice for all the antibodies associated with the connective tissue diseases (like lupus and RA) but all were negative. I also have low ferritin (iron stores) despite supplementing iron for years. It's around 20 which the neurologist said was low enough to cause some symptoms.

So, my real question is whether any of you get attacks or acute episodes of dysautonomia? For a little over a year I've been having these awful attacks of symptoms. For 3-4 hours I get bad chills, shivering, blurry vision, intense tingling in my legs, weird skin sensations (burning, itching), dizziness, and frequent bowel movements (like 5-10 times within this period of time). Also my extremities get very cold and pale or a greyish colour. I get muscle spasms in my calves and thighs too. And I get the most uncomfortable and bizarre internal sensations - I don't even know how to describe it - like a buzzing or pressing down or wave of sensation? As I start to feel better, I get flushed and sometimes my breathing feels funny (not short of breath or hyperventilating, but just not right - hard to explain) and then my extremities get hot, a bit swollen, and red. Afterwards I feel pretty normal, but really really tired and sometimes I yawn a lot.

These episodes happened roughly once a month last winter. In between I had symptoms like tingling in various spots, migraines, facial pain (left side), GERD (started all of a sudden), bad cold intolerance, heart palpitations... I also get symptoms that I believe are more related to my autoimmune disease (whatever it is) like swollen hands and feet in the morning, stiffness, joint pain in my hands, some skin issues, etc.

During the summer, I felt much better. I still had the occasional swelling, stiffness, skin issues, and flu-like symptoms, but I had NO NEUROPATHY at all! No tingling and none of episodes I described above for about 4 months. Then it got cold again in October and it all came back with a vengeance. Now I have all of the awful symptoms on and off all the time with more acute episodes about once a week where I can't function at all. I fainted a few weeks ago and banged my head on the sink. I did go to the ER and my BP was low (80/50) but otherwise I was fine. But for the last month or so (since the very cold weather) I am miserable. I get dizzy a lot, I have tons of burning/tingling/itching in my skin, lots of heart palpitations, diarrhea many times a day, muscle cramps and spasms, chills and flushing, etc.

I did see a neurologist several times last year and he diagnosed atypical migraines and also told me to supplement iron. But I was passed on to Rheumatology after the positive autoimmune tests and they are perplexed by the neurological issues and can't help. One did say that it sounded like my autonomic nervous system was misfiring, but had no idea why or what to do about it. And since they don't know what my autoimmune disease is, they can't offer treatment for that either. I take Nexium for GERD which works well. No other medications. I am 30 years old, by the way, and was healthy up until recently! Normal weight, no serious health issues other than this. I do have Polycystic Ovary Syndrome (a hormonal imbalance).

Help....

Many thanks for any comments or suggestions on where to go from here!

Zoe

[Zoe5710]

Just wanted to mention too that I have had several EKG's and an echocardiogram. The EKG's were normal, but there some minor issues with the echo. I have MVP and I also did not have any variation in my heart rate while breathing. Normally it goes up and down with respiration, but mine doesn't. I did read that on a list of autonomic dysfunction symptoms. My doctor thought it wasn't a big deal and wouldn't cause any symptoms.

[LivingInHope]

Did they do the testing that finds out if you are properly absorbing iron (had that ordered for me)?  With the peripheral neuropathy, while I think it may be problem for some with dysautonomia, did they also rule out vitamin B 12 deficiency and check you for MGUS or multiple myeloma?

With dysautonomia, some have issues with being cold, vision issues can come with orthostatic intolerance and/or with migraines, irritable bowel syndrome, flushing, migraines, etc.  (see private message).  

I think you need to get to a center that specializes in dysautonomia.  Also, an endocrinologist that specializes both in thyroid and diabetes, as the long term blood test you had for blood sugar with the HbA1c test came back high besides your thyroid surgery and family history.

[Zoe5710]

Hi LivinginHope,

Thanks so much for your comments and also for the list of symptoms -- very helpful!

I don't know what tests have been run regarding the iron... I don't have anemia because my hemoglobin is always fine; it's just the iron stores that are low (the ferritin). I have been taking a supplement called SlowFe twice a day in addition to my multivitamin (and whatever I get in my diet) and my ferritin isn't budging! I've been on iron supplements for more than a year and have been taking a multivitamin for many years. Maybe I need to ask my doctor more about that. My B12 has been tested a couple times and is normal. I don't think I've had any tests for MGUS or multiple myeloma.

I do have a referral out to an endocrinologist and also a new neurologist (my old one moved) but no appointment times yet. I'm not sure how to find a dysautonomia specialist. I do live in a large city with many hospitals and a medical school so my guess is there is someone locally who I could see. I'm in Toronto, Canada.

Thanks again,

Zoe

[LivingInHope]

The fact your ferritin isn't going anywhere tells me they should test your to make sure you are absorbing the iron.  Please ask for the soluble transferrin receptor (sTfR) blood test.  

To check on MGUS and multiple myeloma, have them check to see if you have an M spike (monoclonal proteins)  & do a light chains assay, looking at your lambda/kappa light chains ratio if you have an M spike.

If your primary care doctor and this new neurologist don't want to order the tests, you may want to just get a referral to a hematologist from your primary care physician for testing this type of thing with your ferritin and neuropathy symptoms to check things out more.

Finding a specialist in dysautonomia can mean travel for a lot of people and long wait times for appointments, because they are not that common.  NDRF lists Dr. Ronald Schondorf in Canada, but he's listed in Montreal.  In the U.S., Dr. Blair Grubb in Ohio is widely known in dysautonomia circles, Vanderbilt University in Tennessee does research in P.O.T.S., and Mayo Clinic in Minnesota does testing related to dysautonomia.

You're welcome!