Small Fibre Neuropathy

Iolanthe

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Hi

Haven't been on for a long time, as diabetes has been under control. However have been complaining to my GP for nine months on and off about pins and needles and numbness in hands feet and face. Each time he has dismissed it and not even examined me. He reluctantly agreed to send me for a nerve conduction study and did bloods, these came back negative. When I made another appointment just before Christmas, I was in for two minutes, which he said, it was nothing could not be neuropathy related by diabetes as HB1a was fine, said I would have to live with it but he would maybe speak to colleague and call me in the New Year. I was so pi**ed off, I saw a private GP who examined and agreed there was something going on and referred me to a neurologist. The private GP, was surprised that my own GP could not help me within within the NHS. The neurologist was very good, and diagnosed Small Fibre Neuropathy, and although I am having an MRI just to be sure.

Couple of things I would like some views or advice on please. Can anyone else who suffers with this, let me know what treatment is available, seems to be very mixed on the web, most of the stuff is American. Also what is the prognosis with this, I see the word degenerative used but how far can it go? Don't want to be morbid but just want to know what I am up against. Any tips, lifestyle etc and any nuggets of wisdom appreciated. I am only taking Glucobay for my diabetes.

Anyone have any advice on dealing with my GP. All the neurology etc has been done privately, but I now need my GP to buy into this diagnosis so I can access NHS resources and treatment etc. I have sent him a copy of the letter from the consultant, confirming the diagnosis but heard nothing from him, would imagine I am not his favourite patient.

Thank you for your help with this.
 

hanadr

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Iolqanthe
I don't have any neuropathy and never have had, but I have read that it can be mproved by good BG control. You say yours is good, but give no numbers. If you are going by NICE protocols, which say that HbA1c of 6.5% is good control, that's still too high to protect from neuropathy. NORMAL[non-diabetic] HbA1c is somewhere in the 4.6% range. If you can get to around 5% you might well see an improvment.
It can be done. a number of members of thisforum have seats on the 5% sofa.
Hana
 

Iolanthe

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My last HB1c was 5.1, so doing all the right things theres.
 

bowell

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I have Neuropathy and have been prescribed Amitriptyline .

Also started with numbness with pins and needles in hands and feet , i had BG 5.1 HB1C levels then . :?

Now progressed with a burning feeling and a painful feeling of glass splinters in my hands and legs hence the Amitriptyline

I also have spinal nerve damage/pain from a fall , also take Gabapentin, Morphine , Naproxen
and nerve block injections for pain

There is help with Pain control , Consultant told me no magic cure for Neuropathy
Diabetes most common cause of peripheral neuropathy, But often no cause is found

Try and keep BG as tight as you can (Not always that easy with other aliments )
keep a close eye out ,for cuts and infection on feet /legs

for more info see

http://www.nhs.uk/Conditions/Peripheral-neuropathy/Pages/Treatment.aspx
and
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm#159963208

If your GP is no help ,change GP or move practice (best advise i have been given)


You can PM if you like

Bob