Idiopathic? Fibromyalgia? Prognosis for SFN?
 

Hi - lots more questions from me. I hope some of you might know the answers because I feel I've been abandoned by the neurologist and am to see the rheumatologist in three weeks time - but he's usually very disinterested and dismissive of this small fiber neuropathy of mine. My autoantibodies are all negative or equivocal so I'm guessing he might decide to tell me I have Fibromyalgia. Not really happy with this but I'm preparing myself because this seems to be the catch all term for anything doctors don't understand or can't be bothered to investigate any further.

1. If my autoantibodies are negative/ equivocal is this small fiber neuropathy of mine now classed as "idiopathic"?

2. If so what might the prognosis be for me - given it is affecting both arms and legs 24/7? The pain is only intense when I'm still - especially at night. I'm using Magnesium oil spray just now as well as taking B12 sublingually. I am weaning myself off Cymbalta because I don't want to end up on these kind of drugs long term - I've tried up to 40mg over two and a half months and it only takes the edge off - makes me eat too much and seems to make me grind my teeth - which is causing head and jaw ache.

3. I'm apparently to have a skin biopsy at some point but am aware this won't establish the cause - only confirm how advanced my SFN is. So should I just accept that I will probably never know the cause or should I keep pushing for answers in the hope that this might eventually subside or be reversed?

I guess I'm asking at what point most people here with idiopathic small fiber neuropathy just accept this diagnosis and learn to live with it. I've been suffering from these symptoms for several years now and it seems to have progressed up my legs and arms - especially the cold wet sensation I get all day everyday so I keep touching my leggings to see if they are actually wet.

How long does it take just to get used to the awful tingling and temperature issues?:confused:

A lot of doctors who are not as versed in neuropathy as they could be--
 

--don't go through as many investigations as they could, so I believe more neuropathies are labelled idiopathic than actually are. It is true, though, that a good third or maybe more of small fiber syndromes turn up no cause even after extensive investigation. In many of these metabolic dysregulation, toxin exposure, or autoimmune mechanisms are suspected, but are as of yet unprovable.

I would suspect, though, the your rheumatologist may not be as familiar with other, non immune causes of neuropathy, and may not even be familiar with some of the autoimmune ones (such as those that involve antibodies to specific antigens of peripheral nerve.

You can take a look at the following two documents and see if you have had many of these possible tests--the Liza Jane site, in particular was designed to be about as comprehensive a list of tests for possible neuropathy causes as the best minds around her could think of:


www.lizajane.org

http://www.questdiagnostics.com/test...ripheralNeurop

Thanks very much for this link which I've trawled through and found very interesting and helpful. I will ask for print outs of the tests I've had to date but I think many have been covered. One of those tests I don't believe I've ever had is this one Anti-neutrophil cytoplasmic antibody (ANCA) which I believe is for certain kinds of Vasculitis - specifically Wegener's Granulomatosis. I don't have any vasculitic skin symptoms so as far as I know Vasculitis has been ruled out for me but Wegener's always rings bells because I suffer from frequent nose bleeds and the RA/ unwellness and stomach issues and small fiber neuropathy could all be symptoms of this disease I believe.

My GP did say yesterday that sometimes it takes years, decades even, for the penny to drop about some of her long standing patients. She will perhaps be listening to a radio programme or watching a video and suddenly put the pieces together and thing "hey that's what Mrs X has been speaking of for all these years - that's what's wrong!" and she hopes the same thing will happen with me. Hmmmmm I hope it doesn't take decades!:rolleyes:

But we may move to another part of Scotland some day quite soon and if this happens I will try and find a more enlightened medical team who may do the tests that others haven't.

My neurologist is an expert in headaches and my rheumatologist specialises in RA so neither are really terribly knowledgeable about the rarer types of autoimmunity or possible vitamin deficiencies or endocrine or toxin induced problems I feel. I think the neurologist feels he has been pretty thorough by giving me serum tests for Lyme, Hughes, Immunoglobulin, Cryoglobulin and other stuff as well as nerve conduction, MRI of brain and cervical spine.

My ANA, anti-CCP and Ro and La were all negative when last tested a few years ago but I did have a low positive rheumatoid factor - but these make my rheumatologist disinterested. The thing is that I live in the UK and can't afford to pay for private investigations so am limited to what the NHS can come up with for me:(

Mat

I continue to seek answers regarding my "idiopathic" diagnosis, but I am done with testing for now. I will throw any and all supplements I can at it, but like you, I don't want the long-term pharma meds. I was on gabapentin for a few months, but stopped. In lieu of meds I have lidocaine patches which I use infrequently, Morton's espom salt lotion, and recently valerian root has been added to my nightly repertoire.

I'm currently throwing the following darts...

- low carb diet in case the cause is due to glucose issues despite having normal diabetic screening numbers (other testing shows problems, namely the Oral Glucose Tolerance Test and home monitoring with a cheap glucose meter)

- Folate and Methyl B12 in case it's due to methylation issues as I do have some bad mutations

- Now Candida Support and probiotics (and soon a prebiotic) in case it's due to a gut problem

Two possible causes I don't have darts for, but I continue to be suspicious of based on the timing of the onset of the SNF:

- hormonal (I'm 52, and am definitely experiencing hormonal changes with other symptoms. )

- spinal (all MRIs negative, but the SFN hit 3 weeks after I hurt my neck)

Thanks - I'm 52 as well but my menopause came early and is well done and dusted now so I've ruled that out. I do have arthritis in my neck from the MRI but was assured that, as it isn't touching my spinal cord, it couldn't be the cause of the SFN. My lower back is bad too but this wouldn't explain the hands and arms being affected I'm told. They won't do an MRI or x-ray of this lumbar arthritis because they just tell me that it's wear and tear typical of post child bearing woman of 52 - too ordinary to be worth investigating. I'm not so sure because none of my friends have bums that lock when trying to get up from seated position :o!

It is good to find others with such similar issues and of the same age - makes me feel a lot less freaky!

Somebody on this forum with horrible SFN symptoms in his legs got a nerve block shot in his lower back to see if helped with his legs. No luck. Then he got one in his neck, and it helped significantly. The doctor said, "That's not possible."

Makes you wonder if there's something they just don't understand.

My neck and lower back are both a mess by the way. Moderate to severe degenerative joint disease in all joints, but there's no stenosis and nothing is touching the spinal cord. Can't be the cause they say.

Gosh that's so interesting Janieg - I do think there's a lot in what you say. It makes more sense to me than "idiopathic" which I just find impossible to accept. How interesting that we both have the same degenerative issues too. Can this just be a coincidence I wonder? I don't think so :D

When I went to see an integrated medicine doc for help after my neuro threw up his hands, I told her I was there for idiopathic SFN. She immediately said, "Idiopathic just means we doctors are idiots." :D

There is a cause, they just don't know what it is. Something has gone awry in our bodies, and it's eluding detection by all the tests they're running. Either they're running the wrong tests, or perhaps the test doesn't even exist.

I like the idea that doctors feel they are the idiots re idiopathic - I hope they do feel this way and prefer they acknowledge it rather than trying to imply that it's all just a figment of our suggestibility or the result of too much time on our hands studying Google:rolleyes:

Today I saw my podiatrist about my two very atypical Morton's neuromas. He said that he only had come across one other patient with MNs like mine which go beserk at night rather than because of constricted footwear. She too had neuropathic issues. He said he would stake his job on the fact that I don't have Fibromyalgia and if my rheumatologist tries to suggest that I do then I should dump him and move!

He agreed there's a huge amount about the inflammatory process that isn't understood yet. I've been reading up about autoimmune stomach problems as my guts have gone beserk over the past year or two and now my stomach issues are my main problem. Also the nose bleeds and neuralgia in my nose and around my teeth are troublesome.

We will get there one day - even if our doctors are idiots we are not!

I know the idea of "idiopathic" and having no real answer to attach to your symptoms isn't a comforting one. But as long as you have the appropriate treatment, the time without that answer passes a little easier.

So your focus at this point might best be directed at finding the treatment that works best for you. Of course, continuing your search for answers should continue.

The skin biopsy would at least provide you with details as to severity and may open doors for better treatments like IVIG. I understand that may not be possible in your current location, but once you move it may become a reality.

Maybe I missed it somewhere, but what are the exact symptoms you have with your stomach? I only recall reading about pain...what else is going on there and what tests have you had done. I ask because what is going on there, may help direct you to the overall problem elsewhere.