Neuro said my neuropathy "doesn't exist."

[trc1962]

Hi, got the results of my small fiber neuropathy skin punch biopsy and the neuro's ARNP said simply "your small nerve fibers are within the normal range for your age and therefore you don't have small fiber neuropathy." I am frustrated as I have been the entire Summer with lack of answers as to why my legs and arms are hurting and feel very weak. There is nothing I would like more than to not have small fiber neuropathy (or whatever) but I sure wish there were answers. The neuro said "no reason for an EMG either." Where do I go from here? I want someone to test my vitamin levels and make sure I am absorbing them - I have always had a hard time with that due to being gluten sensitive. Any advice is appreciated.

[jazzlover]

Are you taking Vit B 6, by any chance? It can cause nerve pain.

[Anastasia]

I, too, had normal results on an EMG and punch biopsy done at Johns Hopkins.  However, the doctor said that clinically my symptoms are most consistent with a mild form of small fiber neuropathy.  His recommendation was Lyrica and if not resolved, IVIG. 
My local rheumatologist had already prescribed Lyrica based on my symptoms.  So it might be helpful to get a second opinion or see if you can find someone willing to treat you based on your clinical presentation.  Do you have a Sjogren's diagnosis?

[ppk]

That sounds extremely frustrating, and I'm sorry that your doctor seems to be dismissing your very real symptoms.

[trc1962]

I don't currently take b-6 just a b-complex liquid sublingually. I don't have a sjogren's diagnosis although the doctors call it "primary sjogrens" based off a positive eye test and a mildly positive lip biopsy, sicca symptoms and neuropathy that has come and gone with prednisone and aziathiaprine since 2003. I think I have a form if chronic inflammatory demyelinating polyneuropathy based on the symptoms I have that match up to another gal who also had to demand an EMG and IVIG has helped her for 4 years + 500 mg cellcept daily. I am seeking a referral to Seattle to hope to get some things done. Hope to have vitamin levels checked, check that I actually make intrinsic factor, help with thyroid issue and anything else they want to do. I have autonomic issues as well, hypersweating (like always), shut down bowel - like I have tried it all and can't go to the bathroom, my stomach doesn't empty and gets enormous, my eyes don't dilate right to the light correctly and I feel "head heavy" at times. This has been coming on for a year and somewhere there are answers. Now if my insurance will just get me approved. Happy Monday to all and hope everyone is doing okay with the Summer heat.

[anita]

An EMG is ALWAYS warranted if you have these types of symptoms.  The skin biopsy only checks for small fiber neuropathy and the EMG checks for large fiber.  So they can't eliminate the other test just because one was negative....since they check for very different things.  It's amazing that neuros can try to blow smoke in order to dismiss the patient because they don't have the time or desire to help them.  I'd suggest you tell the doctor that you still want the EMG to check your large fibers...and put these doctors in their place.

The skin biopsy should have also checked the morphology (condition) of the fibers as you can have a normal density, yet damaged fibers from autoimmune disease. 

Hopefully you can get some answers and/or at least a doctor that will treat your symptoms with Neurontin or other medication to help with the pain, etc.

[trc1962]

It is bad enough that I won't be able to work full time as a teacher this year, but no EMG to rule out a large fiber problem. Rheummy doesn't want to cross the neuro and it is disappointing for sure. Still trying to get referred to Seattle...insurance companies do rule the world it seems.

[trc1962]

I was able to get an appointment in Seattle for a consult and because my insurance won't cover they will only charge me 25% of the usual charge. I am going on September 21st and hope for answers. Thinking of so many on this board who are so supportive that have kept me searching for answers in my quest to try and get better...it is amazing the support that is offered here!

[trejonina]

Hello, you might want to try magnesium Chloride, there is an article in www.health-science-spirit.com/magnesiumchloride.html.It has really helped my neuropathies and really fast.

[Jasper]

trc ..... I hope your appt. in Seattle is with a Neurologist.

If it was me, I would not add any meds, supplements, or treatments to your regimen before seeing another Neurologist. You do not want any new meds or treatments or supplements to alter your presentation. It is best if the new Neuro can see you and your symptoms as you are currently.

Hopefully the new Neurologist will do a thorough exam and do appropriate testing. Hopefully you will get some answers and appropriate treatment.

[MAT51]

I don't currently take b-6 just a b-complex liquid sublingually. I don't have a sjogren's diagnosis although the doctors call it "primary sjogrens" based off a positive eye test and a mildly positive lip biopsy, sicca symptoms and neuropathy that has come and gone with prednisone and aziathiaprine since 2003. I think I have a form if chronic inflammatory demyelinating polyneuropathy based on the symptoms I have that match up to another gal who also had to demand an EMG and IVIG has helped her for 4 years + 500 mg cellcept daily. I am seeking a referral to Seattle to hope to get some things done. Hope to have vitamin levels checked, check that I actually make intrinsic factor, help with thyroid issue and anything else they want to do. I have autonomic issues as well, hypersweating (like always), shut down bowel - like I have tried it all and can't go to the bathroom, my stomach doesn't empty and gets enormous, my eyes don't dilate right to the light correctly and I feel "head heavy" at times. This has been coming on for a year and somewhere there are answers. Now if my insurance will just get me approved. Happy Monday to all and hope everyone is doing okay with the Summer heat.

I don't understand why you think you don't have Sjogrens when doctors have said you do have primary Sjogrens? Primary Sjogrens is more severe than secondary SJS and is the most obvious cause of a small fibre neuropathy, other than advanced diabetes or alchoholism. The lip biopsy is the most definitive test for Sjogrens so if yours met the criteria then this is by far the most likely cause of your SFN. Certainly in the UK this counts as an extra glandular symptom of SjS disease and is taken seriously.

My punch biopsy last year showed normal, as did my autoantibodies and Schirmers test abd  saliva production test. But now I know that Sjogrens is a very complex disease and since my positive lip biopsy result a month ago everything I've experienced health wise over the past six or seven years. and probably even stuff from decades ago, is made sense of now for me. The previous neuro did try and reverse his diagnosis of a clinically acknowledged SFN after the punch biopsy and nerve conduction tests showed nothing last year. But as the results of my lumbar puncture showed paired oligloconal bands and my inflammatory markers have always been high - sometimes very high - he shoved me back to rheumatology. i domt know if I'll qualify fir further immunesuppressants now or IViG or Rituximab. But I won't let any doctor fob me off again for sure!

[SjoGirl]

Oh dear I am sorry you are in this predicament. I have had issues with absorption and found the only thing that has helped is taking 40 mg of Nexium daily. I've tried to cut back to 20 mg, it's not enough. Best wishes for finding some answers.

[jazzlover]

Most B-complexes will contain B6.

[anita]

The only difference between primary and secondary Sjogren's is a patient with primary ONLY has Sjogren's as a rheumatic/autoimmune disease...whereas secondary Sjogren's is when a patient has another rheumatic disease (RA, Lupus, etc)  I'm not sure why they would call your Sjogren's as primary MAT, since you have RA.  Technically, you have two rheumatic diseases and Sjogren's should be secondary.  But that in no way lessens the severity of your Sjogren's!!

There is NO difference in severity of symptoms between the two...as Sjogren's in either case can range from mild to severe.  And both can have neuro manifestations.  This is from the National Institute of Health:

http://www.niams.nih.gov/health_info/Sjogrens_Syndrome/default.asp

[MAT51]

Anita I've been told and also read that the Sjogren's is usually more severe when it is the primary disease - although this is counterbalanced in that those with secondary Sjogren's have to cope with their primary disease so aren't any less affected overal. I was told this by a professor of connective tissue diseases who felt that my secondary Sjogren's would only ever be a nuisance - but wouldn't warrant non symptomatic treatments of itself. Only the RA symptoms and signs would be taken seriously as the primary disease. 

Regarding myself I'm jumping the gun because I don't see the rheumatologist until next week. But my strong suspicion is that Sjogren's is my primary disease and the RA was a secondary manifestation of this. When I was diagnosed five years ago the rheumy said "I'm diagnosing you with seronegative RA for the time being - but things could change so let's keep an open mind". Now it could be that the DMARDs I was put straight on chased the RA off. But normally,after a few years off these drugs, the disease would have returned but it hasn't. Also I have no erosive damage yet despite five years having past - so to me this suggests the RA was a misdiagnoses and I actually had Sjogren's all along - because this can show itself as RA sometimes I believe. I hope this explains my thinking - although it could be wrong and I might have several diseases co-existing as you say. But my hunch is that I never had proper RA to begin with. We will see.

However I still can't understand how trc1962 can not have been diagnosed with Sjogren's if the doctors are calling it primary Sjogren's? So why is the neuro not prepared to accept this despite normal punch biopsy results? Surely they should be treating before nerve damage occurs not waiting until it is severe enough to show up in a punch biopsy? And if the lip biopsy showed even mildly positive then I would have thought this was pretty conclusive? Therefore treatment for Sjogren's related SFN should be forthcoming for this reason?