Dear PN Friends,

As you may remember I have profound PN in my legs and feet.

Last year I realized that I had small fiber neuropathy in my arms, hands, fingers, face, lips and tongue.

The pain in my finger tips was like needles jabbing into them.

My neurologist prescribed Gabapentin, and finally at 3600 mg I found relief of the worst symptoms. My face still tingles as I get closer to my next dosage (I divide 3600 mg into three times a day).

What I'm trying to understand is what to expect? Will this SFN progress somehow?

In addition to the discomfort, are there other disabling features to SFN?

I don't have PN in my arms (I've been tested twice).

The PN in my legs and feet has not progressed up my body into my thighs (which was my fear when it was first diagnosed as profound 6 years ago).

It seems that SFN is discussed here a great deal, and I hope there are people who an help me understand what is going on and what to expect.

Hugs, ElaineD

The thing is... no one knows what to expect. Both of my neurologists say it can go three ways.
1. It can slowly resolve and not come back
2. It can come in flares of bad and then a little better but never resolve and continue on like that forever.
3. It can progress.

They watch each case and since this is a relatively new diagnosis, we are all guinea pigs. There are SO many causes and when the cause isn't found, there are only pain meds to manage it. When the cause is found, it is sometimes autoimmune and therefore immunosuppressants would be used. When the cause is toxicity, it can resolve when the toxin is gone or the damage can be irreversible. If the cause is deficiency of vitamins or minerals, it might repair with correcting the deficiency, but again, the nerves might be too damaged. The real answer is that they just don't know what will happen with this. There are also infectious causes which can resolve with the proper antibiotic. It is very frustrating. Sorry.

Hi Elaine

I can understand your wanting to get as complete a picture of where your PN might be headed. With there being so many types of neuropathy with so many causes and outcomes, this can be difficult.

It may help to try and identify, as close as possible, which type(s) of neuropathy you have. At a guess, from earlier reading of some of your posts, it would seem you have SFN with motor nerve damage. Sorry I can't recall if you also have sensory nerve damage as well.

From posts by several other members here on NT it would seem that the third type: autonomic nerve damage can be the most harmful when it progresses.

Here's a link to some information on the different types:

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

I hope this is helpful - Like you I'm concerned at my PN progressing. I find that by researching and trying to clarify the different classifications, types & symptoms, it helps me to monitor any changes without getting too anxious. It also makes me aware of which new symptoms may indicate a progression that needs attention.

All the best for finding answers and thanks also for the useful information you posted elsewhere about braces.

My former doc ... and I'm not sure I trust him ... said the body can only absorb about 600 mg of gaba at a time and that you poop out the rest. If that's true, that would mean you should take it 6 times a day - not even possible. Could you maybe try to schedule in 5 doses?? I know I have to set my phone alarm to manage 4x a day, so 5 would be that much worse, but it's worth a try given how severe your symptoms are.


Shaggy

--since it affects the small, thinly myelinated and unmyelinated nerves that subsume the sensory functions of pain and temperature sense, as well as many autonomic functions such as sweating and blood pressure, is not disabling in the sense of motor breakdown or muscle weakness, as the small nerve fibers by definition to do not ennervate muscle.

But, having intractable pain from small fiber neuropathy, and/or disruptions of autonomic function, such as orthostatic hypotension--blood pressure dropping rapidly upon standing--can be quite disabling in that sense.

Most cases of small fiber neuropathy don't lead to wheelchairs or disabilities of that nature. The biggest problem generally is pain control and/or control of autonomic irregularities.

Of course, one can have a mixed neuropathy involving both small and large fibers--the latter, which are myelinated, subsume the sensory sensations of vibration, mechanical touch, and position sense, as well as motor functions, which is what is sounds like Elaine has, if she's had to use braces.

There is a tendency among neurologists to look at neuropathies that disrupt motor functions as more "severe" than those that are only sensory. This may be due to the fact that in the larger nerves, sensory fibers tend to exist more on the periphery of the nerve cable and motor fibers more in the center, so motor symptoms represent a more global process in the nerve. But for many people the sensory symptoms are worse as far as quality of life issues.

Thank you Glenntaj for such a good description, and teaching me a new word. I had to look up subsume

1. My neuropathies have been defined as idiopathic. All known causes that have confirming tests have been ruled out, including multiple MRIs CT Scans and Lumbar Puncture (Spinal tap).

My Duke University Medical Center Immunologist believes that my Immune System attacks the organs and systems of my own body. I have damage to many other organs. But the damage to my nerves is the greatest. The attack is NOT DONE with autoantibodies, but probably with cytokines. There is no test, currently, to confirm this hypothesis.

The neuropathy in my legs and feet is sensory and motor. I am essentially crippled because the Neuropathy is profound (No function at all in two out of three of the major nerves) and I wear braces on my legs, including my feet, which have given me an amazing increase in mobility.

i have damage to my moisture system (Sjogren's type) lung (small airway obstruction) bladder (Interstitial Cystitis) ears (Meniere's and deafness) and of course both PN and SFN. I have Primary Immune Deficiency Disorder and receive IgG through IVIG monthly, and will for the rest of my life. I also have idiopathic anemia, a rare copper deficiency, severe coronary artery disease, and probably more......

I am very happy, however to have had an amazingly full life before all of this began in my late 50's (I'm now 74).

I will schedule my Gabapentin in 6 doses, Shaggy, Makes sense and why not?

Hugs, Elaine

Elaine

Thanks for filling us in on you details. You've had a lot to deal with.
The unusual presentation of your symptoms must make for difficulties with comprehending what's likely to happen.

Are you still seeing the immunologist at Duke? It's good to have a physician that looks outside the box for possible answers and yours seems willing to do that. The Primary Immune Deficiency Disorder would be responsible for many of your organ symptoms - at least you're able to get IVIG to help manage those. I'm guessing you're aware of your susceptibility to infections etc. (something we share) and monitor that.

Going back to your first post and question on what is going on and what to expect with SFN - it would seem your SFN is secondary to the IDD - it's not uncommon for neuropathy to develop with immune disorders. As for what to expect - everyone is different - some have slow onset which progresses to chronic PN others have an acute onset which doesn't improve, and others will go into remission. A lot will depend on the cause, underlying conditions, degree of involvement etc.

You're already trying two of the most recommended treatments for (autoimmune) neuropathy ie: IVIG and gabapentin. Shaggychic's recommendation to extend the gabapentin doses makes sense - let us know how that goes for you.

Like you I'm also grateful I lived an extremely full life before the onset of illness and thanks to a basically pragmatic nature am learning to cope with multiple incurable conditions. You seem to be very capable at working out what you need to do to manage things (I vaguely remember your posts about sourcing the braces), and hopefully can do the same with the PN.

Thank you for sharing Elaine. You have inspired me and it is much appreciated.

Hi Elaine,

I understand exactly how you feel wanting to know where this is heading. As echoed by the other replies, they just don't know enough about this sort of thing. I dont quite understand why. I cant believe this is a condition that just magically started affecting people over the last 10 years. So many people must have suffered even worse than we do before the advent of skin biopsies. I was fobbed off terribly until I pursued the biopsy.

I saw a neurologist again this week, I asked him how many people he sees like me with full body SFN in all limbs and in the face, teeth even. He shook his head and said he doesnt come across many people like this. Argh. That's a great relief for everyone else in the general population but it just adds to the isolation doesn't it.

I have to be grateful for small mercies and just say at least I wasn't really young , like a child or 18 when this started. I am 36 so feel highly short changed as Im not old either but it could have been earlier. My main fear is staying physically and more importantly emotionally above water for long enough to raise my small son to adulthood.