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).
Many thanks for any comments or suggestions on where to go from here!
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.
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.
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.
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.
Your symptoms sound very similar to mine. In. Additionally, during flares my equilibrium is affected - I feel off-kilter and seized up and stiff. I am more easily physically fatigued and I conk out - literally, cannot stay awake. Sometimes my throat feels constricted. I also struggle with word-finding and brain fog.
Cold weather and rapid shifts in barometric pressure trigger my symptoms to such a degree that my husband I are moving from Brooklyn to Los Angeles in three weeks.
Beyond my symptoms, I've been diagnosed with the following:
Autoimmune hemolytic anemia (2002)
IgA deficiency (I have none). And though I have plenty of IgM and IgG, they don't seem to function correctly. I was given a pneumonia vaccination and didn't produce any antibodies, and I now receive monthly IVIG treatments.
Small fiber neuropathy.
B12 deficiency (but was normal in a repeat test).
Extremely high Epstein-Barr titer during one bout of illness.
Low C3/C4 complement levels.
Mild hearing loss (middle ear).
Periodic outs of high blood pressure that then returns to normal.
I feel a bit silly listing all of these seemingly unrelated things, but who knows, maybe they really are connected somehow.
Have you ever been tested for Sjogrens? A lip biopsy is the definitive test, and I'm about to ask my rheumatologist for one. Sjogrens can cause autonomic dysfunction.
My neurologist doesn't think I have autonomic dysfunction, but I know I do. I'm hopeful I can find a dysautonomia expert in Los Angeles.
Hang in there and keep pushing for answers and treatment. Please let me know if you have any questions. You are the first person I've come across with such similar symptoms.
I wa diagnosed by Dr. Grubb when I was 14 (16 yrs.) withs POTS and SVT. Have had four ablations since on my heart. All was fine up until 4 yrs ago when I started experiencing almost everything described above. I have severe nerve pain. That flares up in my legs, hips, and back. I also started suffering from severe GERD at that time. Over the course of theast four years, I struggle with severely cold hands and feet that feel as though they are burning they are so cold, and then when warmed, they feel extremely hot and swollen. I also now wake with swollen hands and feet. My joints in all my fingers ache during flare ups as well as my feet and elbows, wrists and knees. The pain on these joints can only be somewhat relieved by cold compresses,but the pain is so uncomfortable in my joints and legs, hips that it makes me writhe and want to cry. It's so hard to explain. I do get numbness and tingling in my hands and feet pretty often, less so in my legs. I too, when I have these flare ups struggle with brain fogginess and trying to tinf the right word when I am saying a sentence. New, to this past year, I get burning mouth syndrome as well. Headaches are pretty common for me. So severe I get nauseous and need to lie in the dark and in quiet. I also still struggling with tachycardia upon standing or doing simple things like washing my hair or using my arms a lot. Fatigue is a whole other beast of its own. I have been to Cleveland Clinic three times now, passed from one neurologist to another to a rheumatologist. Most tests always come back normal. Have been told have idiopathic dysautonomia. But, as of today, am waiting to get onto a neurologist again to see if anything further can be done. I am always searching for answers or suggestions from others suffering from this as it is such a rarely discussed condition. I have also found that during flare ups it affects my bladder as well. I too, have had ovarian cysts that have been a recurrence. It helps to read of others out there looking for answers, though at same time am sorry anyone has to deal with this bc it is beyond frustrating and annoying getting passed from doctor to doctor. I hope by now you have found some answers and are doing better! Best of luck, and please keep informed if you find a competent or maybe I should say a doctor interested enough in tackling this condition. Well wishes to you :)
I found this question while searching for some advice for coping with Neuropathy - especially in cold weather. Zoe, I hope that an answer was found for your health issues by now...I see that your post was over 2 years ago, so I'm not sure you'll even see this!
I was diagnosed with Hashimoto's Disease (Thyroid) about 15 years ago, and have been on Synthroid since then. I am not diabetic, but nearly every doctor I've seen in the past 20 years has mentioned I have many of the same symptoms as a diabetic EXCEPT I have normal glucose levels (usually 80-85).
I've had so many tests for auto-immune diseases show sometimes postive and other times negative results - such as R.A. Factor, Lupus, ANA. It's very puzzling!
Several months ago I had another EMG and the neuropathy is much worse in my feet and one of my hands, so the Neurologist prescribed 300 mg. of Gabapentin, which she recently increased to 600 mg. If seems to relieve the foot pain at night for only a month or so, then gets worse. She is really working hard to figure out WHY I have Neuropathy and balance issues. Also, now I have "foot drop" (which some people call "drop foot" only in my left foot. I had more tests and will get the results next week (B12, folate, ANA, RF, TSH, SSA, SSB.
I also wear compression socks (only up to my knee) for edema, and during the cold weather I wear warm socks on my feet, also - sometimes TWO socks on my left foot for the pain.
If anyone can offer any suggestions, I'd love to hear them. Thanks!
I haven't checked this site in a couple years, but I got an email alert when you posted your reply. So yes, I have an answer... sort of. My official diagnosis is Undifferentiated Connective Tissue Disease. That is the label that you are given if a rheumatologist is certain that you have a connective tissue disease based on clinical tests and symptoms, but you do not fully meet the criteria for diagnosing a specific one (like lupus or Sjogren's). It is a real diagnosis even if it doesn't sound like one (!) and a rheumatologist will monitor and treat people with UCTD though it's generally looked upon as a milder, less serious disease than lupus or scleroderma or RA, etc. Most people with UCTD end up later being diagnosed with another CTD when their disease fully differentiates. But sometimes people keep the UCTD label for the rest of their lives. My disease most closely resembles scleroderma so I certainly will not be surprised if my diagnosis changes to that over time.
The things that led to that diagnosis for me (along with the neuropathy, which can sometimes but not all that commonly be caused by connective tissue diseases) were my high positive ANA (1:640 speckled and homogenous), my severe GERD (can happen on its own or in other diseases, but is extremely common in people with scleroderma), Raynaud's (which is a condition in which the extremities, usually the fingers, get very pale, cold, sometimes turn blue, and are painful and/or numb when exposed to cold -- again, it's possible to have Raynaud's on its own or with other diseases, but nearly 100% of people with scleroderma have a severe form of Raynaud's), some mild skin involvement, and abnormalities in the capillaries in my fingernail bed.
The last one I mentioned is a weird one, but very important. If you (or anyone else) reads this and wonders if they could have a connective tissue disease, PLEASE get a rheumatologist (not a family doctor) to check your nailbed capillaries. It is a very cheap, easy, painless test to do. He/she just puts a drop of mineral oil on the finger and looks at the area through a handheld microscope with a light (similar to what is used to look into your ears or mouth at the doctor). Healthy people have straight, uniform capillaries. People with connective tissue diseases (especially those with Raynaud's) usually have abnormal capillaries that are enlarged, looped, dilated, twisted, and disordered. The area may look a bit red or puffy to the naked eye or it may look normal. The test is very accurate and specific so DEFINITELY worth having done if lupus, scleroderma, RA, Sjogren's, or the other CTD's are being questioned.
The connective tissue disease most strongly associated with neuropathy is Sjogren's Syndrome. Most people who have it have a very dry mouth, eyes, and other mucus membranes (and skin) though it's possible to develop the neuropathy or other symptoms first, and get the dryness later on so don't discount it if you don't have severe dryness. Other symptoms are general muscle and joint pain, fatigue, and a bunch of other nonspecific symptoms.
I was very sick for about 2.5 years and then started feeling a lot better. I have been stable and doing great for a little over a year now. I still have some unusual symptoms including neuropathic ones, but they are nowhere near as bad as they were. I feel pretty close to healthy. It may have been a "spontaneous remission" (that does happen sometimes) or it may be because a drug I had started taking finally kicked in. The drug is Plaquenil. It is an anti-malarial drug that acts on the immune system. It doesn't suppress the immune system like some of the other drugs used to treat autoimmunity, which makes it safer and carries fewer side effects. It modulates certain receptors in the immune system. I feel that my improvements are due to Plaquenil. It is prescribed (in addition to for malaria) for people with lupus, RA, Sjogren's, and scleroderma. And UCTD and MCTD (mixed CTD).
I think that my neuropathy is primarily caused by poor circulation. The nerves just don't get the oxygen that they need and they malfunction. I say this because when I am warm enough and the blood vessels are open, I don't get any tingling and overall feel much better. When I get cold (or stressed out) the blood vessels constrict (this leads to the pale/blue fingers of Raynaud's too) and I get weakness, tingling, migraines, and other problems. If this is the case for you too, then medications that open the blood vessels (like blood pressure meds taken at a low dose) could be very helpful. Examples are the calcium channel blockers like Norvasc (Amlodipine) or Nifedipine.
I did try both Lyrica and later on Elavil and they didn't do anything for me except make me dizzy. Elavil caused me to gain 20 pounds and my heart was racing all the time. Did not improve pain or stop the tingling/numbness, etc. so I came off of it.
The only medication I take currently is Plaquenil.
I hope this is helpful. Feel free to ask any questions.
Not sure if you found a diagnosis to your idiopathic neuropathy but after 2 yrs i researched a renown Dr who specializes in hard neuropathy cases. I have a genetic small fiber poly-neuropathy with a secondary neuro muscular disease. All related. Brain tells nerves what to do and the nerves tell the muscles what to do. Unfortunately its like that game telephone. The nerves don't get all of their marching orders.
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