[MAT52]

Can anyone here tell me if my small fiber neuropathy is advanced and progressive or mild please? My EMG and brain MRI and F waves in one little finger were all clear a few weeks ago. However when the neurologist assessed me himself in November he felt I had an advanced and progressive SFN. He put me into hospital (Scottish NHS) to try and establish whether or not it is immune mediated. My GP tells me he thinks it must be from the CSF result - raised immunloglobulin levels.

However in his last letter 8 months ago my rheumatologist ruled out vasculitis or any separate connective tissue pathology including Lupus - on the basis of my negative autoantibodies to date. He wrote "she continues to complain of nerve pain. I can only assume this is a mild small fiber neuropathy. I do not plan to investigate this".

I'm so confused - is this lumbar puncture result (immunloglobulin) likely to change his attitude towards my symptoms or is he likely to call it idiopathic and only suggest I try more antidepressants and anti convulsants?

I feel caught somewhere between rheumatology and neurology with both passing the buck - probably for financial reasons.

I should add that my symptoms started 5 years ago with deep heat surges in my wrists. This stopped with NSAIDS, steroids and DMARDs but came back when I failed to tolerate these drugs and stopped. Now I have burning and wet sensation up above my knees and elbows with lightening bolts of pain in random parts sometimes - the wet/ freeze/ burbing is 24/7 despite trying Amitryptiline, Gaberpentin and now Duloxitine/ Cymbalta.

[glenntaj]

--and, in fact, can be secondary effects of all the anti-nuclear antibody and rheumatoid factor conditions:

http://neuromuscular.wustl.edu/antibody/pnimax.html

Your finding of raised immunoglobulins in spinal fluid is fairly inspecific; it would be more important to find out which classes or specific antibodies are there, and/or to be titred for those specific antibodies in serum.

As to determinations of mild vs. not so mild versions of neuropathy, that is usually interpreted through microscopic examination of the affected nerve fibers--how deteriorated they are and over how much of the body that deterioration can be demonstrated. It is not correlated well with degree of symptomology--people with mildly damaged small fiber nerves, for example, can have terribly painful burning and dysesthetic symptoms, as the brain misinterprets the signals from the damaged but still somewhat functional nerves, and some people with completely destroyed nerves have more numbness than pain, as those areas no longer transmit signals.

[MAT52]

Originally Posted by glenntaj

--and, in fact, can be secondary effects of all the anti-nuclear antibody and rheumatoid factor conditions:

http://neuromuscular.wustl.edu/antibody/pnimax.html

Your finding of raised immunoglobulins in spinal fluid is fairly inspecific; it would be more important to find out which classes or specific antibodies are there, and/or to be titred for those specific antibodies in serum.

As to determinations of mild vs. not so mild versions of neuropathy, that is usually interpreted through microscopic examination of the affected nerve fibers--how deteriorated they are and over how much of the body that deterioration can be demonstrated. It is not correlated well with degree of symptomology--people with mildly damaged small fiber nerves, for example, can have terribly painful burning and dysesthetic symptoms, as the brain misinterprets the signals from the damaged but still somewhat functional nerves, and some people with completely destroyed nerves have more numbness than pain, as those areas no longer transmit signals.

Many thanks for this glenntaj. I still have so much to learn and although I'm very ready to try, it's really helpful to garner information from people such as yourself who obviously know so much more than I do.

RA related neuropathy - I believe my rheumatologist thinks I have a monocyclic RA. This is a type of RA that only affects 5% of sufferers in that aggressive treatment for over two years seems to have halted it or chased it off. He therefore thinks my RA is quiet and non erosive. I do however have a raised to high sed rate and PVC always and apparently this confirms autoimmunity but not active RA. My joints are unscathed in the main and all my inflammatory problems seem to be in my soft tissue presently. Normally RA presents as synovial swelling - as mine did for a few years. I think the Methotrexate was sufficiently aggressive to chase it off - perhaps for good if I'm lucky. When I was on MTX injections the neuropathy/ parasthesia abated completely and only came back when horrible side effects took me off it again.

I did have serum blood tests taken straight after my lumbar puncture. These included "screening bloods for Serum ACE, Immunoglobulins, VDRL, Lyme and cryoglobulins" - to quote my neuro's letter. He will write again when he has the results and my GP will tell me if anything has shown up when I see him a week today. I will ask for a copy of the neurologist's letter and also of the lab results so I can try and learn more.

I already knew that the amount of nerve pain doesn't necessarily correlate with damage to the peripheral nervous system or severity of the SFN.

However my main symptom has neither been pain or numbness to date - although I am in a lot of pain frequently. But the worst aspect has been with cold, wet sensation up both legs which appears to be rising so that it is now well above my knees and elbows. This and constant pins and needles have been the symptoms I've found quite distressing - although now I feel I'm more or less used to them and I wouldn't really call this pain. I still often touch my legging or jeans to check they aren't actually wet. It has progressed from just my feet and hands to right the way up my limbs 24/7 now. When not experiencing bolts of nerve pain or ache in my legs/ ankles - I become aware that the tingling is also in my mouth and lips now too.

The other symptoms that I find difficult to manage is the sweating. I stopped sweating entirely a year ago, even after rigorous exercise. But recently I will suddenly find my palms wet or my feet - or wake up with a drenched chest. I'm over my menopause now and it was very uneventful for me but I guess hormones could still be knocking around. Also my pelvic floor (being a bit reserved here!) or V area is numb. I've lost my sense of taste and smell to a large extent - and my toes are often bright white despite my feet and hands burning all night. I feel my inner thermostat has broken down completely!

I do also have dry eyes and mouth and nose but not so badly that the optician or dentist will remark on anything beyond confirming that my moisture production is low - especially in my eyes. They tell me that primary Sjogren's patients generally present with corneal ulcers and rotten teeth where mine aren't in that league. My Sjogren's antibodies are negative and so is my ANA. The rheumy just comments that this is normal in RA patients but I do wonder if it's part of the neuropathy.