Originally Posted by SylvieM

Hi,

I'm in the same boat as healthgrrl: small fiber neuropathy (SNF) with both sensory and autonomic effects (dysautonomia). Lots of other possible symptoms with dysautonomia: rapid changes in blood pressure and heart rate, insomnia, digestive issues, excessive thirst, dry eye, strange reactions to temperature......the list goes on. It could be causing your dizziness and cold hands/feet. There is an excellent website DINET (Dysautonomia International) that will address anything you could possibly want to know. It is a rare disorder and many docs have never heard of it. My first neurologist was scarily ignorant!

My disorder is apparently the result of drug toxicity (antidepressants..serotonin syndrome). This is why people here are asking about your meds. Certain antibiotics and statins can set it off.

I just had a bunch of blood work done to determine whether I have an underlying autoimmune disease....which can also cause all this. Like you, my numbness/tingling came on suddenly and are progressing. However, other dysautonomic symptoms are improving.....who knows what to think?

In US, insurance companies insist upon an EMG (no picnic) before allowing skin biopsies for SNF. My EMG was normal, but the biopsies were positive.
The two neurologists I have seen, including a national dysautonomia expert, were basically useless in generating some sort of explanation/treatment plan. My rheumatologist is great....no help because I think it is unlikely there is something autoimmunilogical going on.

If anyone knows of a great SFN neurologist in NYC, I would love the reference!

My treatment...supplements (l-lysine, magnesium, CoQIO...there are others suggest ed here). I have done yoga for years, but my practice is hampered now because of of palpitations and dizziness. I'm seeing a cardiologist Monday. No "one stop" shopping with dysautonomia....but take heart, for you only have a couple of symptoms.

However, I began working with a yoga/masseuse one-on-one...best thing I've done!

I take .5 mg Klonopin for sleep, and I got my hands on some medical marijuana through a friend, which I find miraculous for neuropathic symptoms and pain. Just was made legal here in NY this week, and my PCP has promised me he'll get certified....hope he hurries.

Anyway, no telling yet what is causing your symptoms, so don't worry too much...just insist on the biopsies. Also, just do some reading about dysautonomia....May make sense....

Hope this is helpful!