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No they never really told me the cause of the Bell's, not sure people every know. I took acyclovair and prednisone and it eventually cleared, maybe it would have on its own.
I did always think related, I have even had some instances of restless leg at night and leg cramps but not recently. That would usually occur if I drank wine or something. Not drinking anything right now and was a light drinker before.

Quote:

Originally Posted by SylvieM (Post 1191633)

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!

Hi SylvieM,

I have SFN and live just outside of NYC. Have you been to a Neuro Dr in NYC? I have been looking at Columbia Presbyterian but they have a long wait list depending on which Neurologist you pick (5 of them) and I heard Mount Sinai is good too. I have seen 4 Neuro's outside of the city and none of them were very good. My present Neuro doc referred me to Columbia because she's baffled by some aspects of my case.

Here's a link with details about the opening of medical marijuana facilities in NY; http://www.lohud.com/story/news/2016...ains/78277244/

All the best,

Cliffman :hug:

I would round out the B12 with a bio-available B complex. All the B's works together and need each other.

Also consider Magnesium, Omega 3 oil, and find out what your Vitamin D is.

This is totally my opinion: If you don't need Gabapentin (no real pain, symptoms not keeping you from sleeping, etc.) I would not start down that road. It is not like taking an advil. 100 mg is not anything for that drug and it usually takes time to build in your system before you see any results. Neurologists and GP's throw this at everyone with any of our symptoms. I don't believe it will keep progression from occurring. It has helped some posters and there are supporters of it, but I am not one. I am weaning off now. At 300 mg, which is practically nothing, I have terrible brain fog and that gets me very depressed.

My feet also get very cold as do my hands.

Quote:

Originally Posted by acydgod (Post 1191655)

No, cause of Bell's never really identified, not sure it ever is. I went on acyclovair and steroids and eventually faded but it may have just been time.
Had no virus (cold symptoms) at the time.

As I'm typing this (night) I am very fatigued and lost my appetite, feeling very down. Seems to happen at night. I took 100mg gabapentin last night, might again but didn't think there was any effect.

Thanks for all your postings, helps to know there are others out there for sure.

My LLMD says bells palsy = Lyme disease unless otherwise proven. Get an IGENEX test. Regular tests are NO GOOD for detecting Lyme. They will tell you that you don't have Lyme when you very well could have it. Find an LLMD.

Quote:

Originally Posted by onebeed (Post 1192400)

I agree. I think that Lyme disease still should be on the table as a potential cause. That Elisa screen is not very helpful for ruling it out.