I have been indisposed for quite awhile, but I have access again. Does Small Fiber Neuropathy (SFN) and EM go together with many of you? I was diagnosed with SFN before EM. The combination is what finally ended my employment.
I have been trying to transfer my care to the VA because I am losing my employment insurance next summer. So, the government neurologist not only doubted my SFN but would not even address EM! Really, he IGNORED my talking about EM like I was not even talking...unbelievable. The VA will not approve my medications. I will just have to find another way.
Back to the topic. My symptoms include severe hand pain in the morning that lasts about an hour but that does not seem to be under SFN or EM. Any thoughts or experiences that could shed light on this?
Oh, and a shout out to Mads...she is such a blessings to us all.
So glad to see you!
Firstly, let us address the burning issue of medical care (no pun intended ;)), and access another Dr. I am going to send you an updated list for your area OK. Finding a compassionate proactive medic is imperative. You certainly do not need this terrible ongoing stress burdening you and your wife. I know this has been going on for a long time - bless you. Just to add ,as A Brit ,I do not understand why your extant SFN medications will not be approved .
Secondly , whilst EM is considered small fiber neuropathy by any other name , I want to reassure that it doesnt mean one has EM syndrome. Many EM'ers are diagnosed with SFN ,but not all.
Remember , SFN is associated with a wide variety of diseases and disorders including diabetes, thyroid issues, sarcoidosis, vitamin B12 deficiency, HIV, neurotoxic medications (including chemotherapy and antiretroviral agents), celiac disease, Sjogren’s Syndrome, Lupus. With all these disorders, about 50% of SFN diagnoses are ‘idiopathic’; i.e., no discernible cause is found..An autonomic nervous system test called QSART is most commonly used to diagnose SFN, although it’s more a measure of autonomic functioning than nerve damage. What autonomic symptoms do you have?
I think sometimes clarifying an EM diagnosis is ultimately getting back to basics ie: does exposure to heat and exertion( in any sense) precipitate symptoms.? Can you induce a flare by running affected limb under hot water?.Many of us do not have what is deemed 'classic EM', but we all share commonality of heat intolerance.In terms of 'heat intolerance' have you had any provocative studies of lower limb/arms ? Vascular to reveal evidence of increased blood flow and temperature without an increase in oxygenation. Dermatological to test for urticaria (heat allergy) via punch biopsy during a 'flare'.Thermoregulatory sweat testing is another , but we all know such tests are not used per se. Are you keeping a photo/pain log to support the clinical presentation of symptoms during Dr consultation?.
OK. Enough questions to answer ;). Have a quick look at articles attached.
I know other members will have a lot of suggestions and advice to offer.