[dmouse]

If I may.
Okay, so I'm trying to educate myself more on this SFN. I just read an article from Johns Hopkins that said weakness and balance problems are associated with polyneuropathy, but not small fiber neuropathy.
I have both balance problems and muscle weakness, but my dx is SFN.
Can anyone explain this? Are they really different neuropathies? Is it possible my dx is wrong? Does it really make a difference?
Thanks in advance.
dmouse

[dahlek]

understand 'neuropathy' let alone all it means?
Thing that makes it more confusing is that EACH one of us has gotten 'it' in different ways.
Re-read this from the 'stickies' carefully... and slowly so as to asorb it.
http://www.aafp.org/afp/980215ap/poncelet.html
It discusses some of the different causes, and also emphasises how varied and different onset, and effects can be. Even tho this is a ten-year old paper, it's clear enuf for us mere patients/sufferers to understand.

This one is a bit more technical, but can cover the gamut as well...
http://emedicine.medscape.com/article/1171051-overview

Then, it's up to you to sift thru the different 'stickies' and decide which one fits you best? This site is extensive but gives a thumbnail sketch of the hundreds of different types.
http://neuromuscular.wustl.edu/alfindex.htm
Basically there are four types of neuropathies: Inherited, acquired [immune triggered- heart attacks, diabetic] , toxic [poisons, alchohol], and traumatic [spinal or other bodily injuries that affect/effect the nervous system]. Many combine #'s 2&3 into one of acquired with subsets...

As for SFN balance and weakness issues? Have you been less active than before? As in a LOT less? I ask as my own initial of SFN was the result of a 2-day hospital stay after which I could barely walk! Being in that bed for 2+ days let me vegetate totally and things went from there to worse after several months home.

If it were me, and based on my own first [now EX] neuro's assesment, I would go get a second opinion ASAP. That means honestly at least 2 months wait? But if you are available for a cancellation at the drop of a hat? It could be well worth it. Also if your GP could put in a good word as well? That helps heaps in getting you seen asap.

Nerve damage at first, isn't what the long term damages could be. A nerve conduction study done within the first 4-8 weeks from a sudden or any onset will likely change after about 6 months, IF it is going to be deteriorating at all. A good neuro should monitor at varied intervals for changes in the conduction studies....

I can't say whether your SFN diagnosis is right or wrong. I can only say, that based on my own experiences the numbness progressed...agressively up my limbs and the first [now-EX] neuro did not do additional testing -some of it quite simple to eliminate other possibilities. Obtaining other neuro opinions clearly indicated that some 'other possibilities' were happening and while treatments are limited? The best treatments I can obtain are being obtained. Each doctor has their own opinions and they are usually based on their past training..if what you present [to them] is within those training parameters they aren't gonna be what I call 'curious' and look any further. Neuros who've seen more of the odder neuropathies will test.

Honestly tho? Treatments are limited for neuropathies - the 'menu' of meds tried for most are posted in the 'stickies' somewhere... It is a VERY GOOD list. Each of us is different and once thoroughly tested to eliminate the worst of PN issues, we just have to go with what we have. Wish it were different but not much has changed in the 6 years since I got this stuff, I am very sad to say. Well, at least I can still type! Tho not as fast as in the past! Sigh? 's and hope! - j

[dmouse]

Thanks again for your input. Thanks for the links too! I'll have to print this stuff out, only way I can retain any of it. I've been reading, but not grasping.
Guess I'm a bit impatient!
I have to wait for insurance to get a second opinion. My only option is Cleveland Clinic... that's who my neuro is with. Oh well, take it as it comes!

[glenntaj]

--will not affect balance per se, as that is controlled by larger fibers. All motor neurons are also larger, myelinated ones, so muscle weakness is not generally associated with it either.

That having been said, though, many people have mixed types, in which both small and large fibers have some damage. Also, as dahlek points out, if you have small-fiber symptoms of pain and numbness, moving is going to become more difficult (you may not feel up to doing it as much) and lack of exercise may result in muscle weakness and balance difficulty (especially if there's numbness). It's part of the reason why most of us would say one with small-fiber neuropathy (indeed, any neuropathy) should exercise to the limits of his/her tolerance--lack of physical activity only tends to make things worse.

Sophisticated neurological testing (EMG/NCV, manual mucle testing) should be able to distinguish between muscle deterioration that is caused by de-enervation and that which is caused by lack of exercise. People who are bed-ridden or otherwise incapacitated are hard to tell from people with de-enervation without such testing. Balance is a bit easier to test--but people with balance problems may have cerebellular, sinus, or semicircular canal issues that have little to do with neuropathy.

[dmouse]

Thanks again. I meant to post yesterday that my activity level is actually up since I lost my desk job last Feb. (wanted to get back to the Super Bowl!)
I'm home taking care of the house, dog, cat and grand-daughter, plus, I've mentioned this in other posts, my hubby's a musician and at the very least, I'm out dancing every other weekend but usually its every weekend. I dance almost every song, so I'm moving 3 - 4 hours those nights, barely sitting down plus helping him load gear in and out. For the record, before its asked - I'm the designated driver, so not a lot of alcohol.

The balance thing may not be very relevant, it could just be caused by lack of sensation in my feet and ankles - I do notice that I trip on them once in a while. I was just wondering. I just recall during my exam when he asked me to stand there with my eyes closed, I kept falling to the right. ENT I just saw said my ears and sinuses were fine.

Again, it's mostly just wondering, trying to connect the dots with whatever is wrong with me. If I can narrow down symptoms to causes, it may help understand what is actually to root cause of it all. I'm so close to a true diagnosis, but still so far away. Gets a little frustrating.

Thanks again for taking time to answer, and for being patient with me!

[nide44]

"...........I'm out dancing every other weekend but usually its every weekend. I dance almost every song, so I'm moving 3 - 4 hours those nights, barely sitting down plus helping him load gear in and out..........."

Are you sure you have PN?
I can't think of anyone on these boards
who can do even 1/10th of what you describe.
I used to be a musician in bands, and during the 70's and 80's could
perform carry gear, and dance as you describe, but since the 90's-with PN,
could never last 15 minutes, much less pick up all the gear and hump it
as I used to.

[dmouse]

I was actually dx'd with SFN, not PN. And no, I'm not totally sure.

My neuro tells me I do based of the QSART results and punch biopsies. I do have most of the symptoms, but, as I'm learning, it effects us all differently. I'm a graphic designer, and my symptoms are worst when I've been "under the gun" with deadlines and hammering away at the keyboard, or scrubbing floors etc, or out shopping for more than an hour (tires me out terribly). I never said the dancing didn't effect me, just that I do it. I'm a total sop for at least 2 days after. I'm a firm believer in "use it or lose it".
My "story" is in the post "How did it progress over the long term"

I'm also a tough 'ole irish woman and mother of 3, grandmother of 1, with a rather high tolerance to pain, and when it does hurt, I try to ignore it and push through it because I must.

[glenntaj]

--is PN.

"Small-fiber neuropathy" is just one of many kinds of "peripheral neuropathy", which just means disruption of any nerves beyond the central nervous system (brain and spinal cord).

I do agree, though, that if you can tolerate that much dancing, you probably don't have much in the way of larger-fiber involvement (at least not yet, and hopefully it'll stay that way).

[dmouse]

My mistake. The way I understood it was the SFN involved only the unmyelinated small fibers while PN involved the myelinated long fibers. My EMG showed no long fiber involvement.

Guess since I don't seem to "have it as bad" as most of you, I should stop concerning myself with it.

[nide44]

"....I should stop concerning myself with it."

Not necessarily.
You are prudent in wanting to learn as much as possible for the diagnoses you now have. Since ther is no cure for PN (or SFN), it is the treatment and the "do's & don't s " that you must be careful of.
Exercise (any type - dancing) is good to keep up muscle tone & usage.
Do as much as you can, without overdoing it. Watch out for over exerting yourself and keep as active as you can.
The only way to help yourself and be your own advocate, is to learn and know- as much as possible about this condition.
Then you and your doc can make intelligent, informed decisions, together.