Prickling/tingling in extremities?

ProudActivist · Jan 26, 2020

Ryan31337 said: ↑

Hi @lunarainbows & @ProudActivist,

I'll PM you both the doctors names but all this is being done at Kings College Hospital, Denmark Hill.

The normal process is to see their nerve clinic (apparently one of only 5 centres in UK specialising in SFN) for a skin punch biopsy. If the result is equivocal then they send you for microneurography with another neurologist, which is supposedly more sensitive for autonomic SFN. I happened to go about it the other way, having the microneurography first because I was sent there by the KCH neurocardiology clinic, who look after me for POTS.

I am so impressed by these docs. They seem to be some of the very few UK clinicians that actually 'get it'. I guess because they are active researchers in their fields as much as they are clinicians. You do need to cherry-pick who you see to get this help though. I was seeing one of their neurology colleagues in a myopathy clinic, I thought very highly of her, but once I moved out of her area of expertise and asked about SFN she told me it was a waste of time and there was no point investigating it... You do need to appeal to each individual doc/clinic's special interest to get anywhere.

As for the Pyridostigmine, the side effects wore off and I started to see definite improvements. The first thing I noticed was better sleep and feeling less tired the day after activity. I haven't noticed a profound improvement in orthostatic symptoms when standing, but I definitely suffer far less from the effects of being upright/active afterwards. Both immediate POTS fatigue and the delayed PEM-like fatigue.

Ryan
Click to expand...

I am so pleased you have responded well to the pyridostigmine. I am going to ask about it this year. I find it hard to get on with trying new things as it feels so risky to change anything (because things are so bad!).

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Prickling/tingling in extremities?

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Prickling/tingling in extremities?

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