[spkar0517]

I have been suffering from snf since August 07. Multiple doctors and meds, just like everyone else. Seems to be WAY too little known about causes, treatments etc. It is very difficult to accept that this is the rest of my life. Prednisone has me under control, but now symptoms seem to be extending from legs to arms. neurologist is great, but think they are limited to what everyone else doesnt know about this issue. i believe there has to be a connection to something more.. another underlying issue causing the symptoms. but there is so little research. everything is focused on diabetic neuropathy. someone should focus on those of us with no obvious or evident underlying issues. The more i research this, the more i feel like the outcast. no known cause, so no reason to find out. i think we should join together to encourage more research into the idiopathic neuropathy.. the term almost sounds like we are outcasts.

sorry if i am bringing you down, but i am very frustrated with our system.

[glenntaj]

Not so sure what you mean by "snf", but from the rest of your post I'm assuming in may have something to do with dysfunction of the small (unmyelinated) nerve fibers--and that which is not caused by diabetes or impaired glucose tolerance.

There are quite a number of people who fall into the idiopathic small-fiber neuropathy category who frequent our Peripheral Neuropathy area (if you haven't found that already):

http://neurotalk.psychcentral.com/forum20.html

Thre is actually some knowledge out there about the condition--there are many possible causes--sometime the problem is that the doctors know less about these, and the testing involved, than savvy patients do (as the latter have a vested interest in keeping up on the research).

Feel free to post more about your situation--we will try to help all we are able.

[azoyizes]

Hi, and welcome to NeuroTalk! I don't know what SNF means, but I do know that there are a lot of good forums here with lots of friendly and helpful people.

[(Broken Wings)]

Originally Posted by spkar0517

I have been suffering from snf since August 07. Multiple doctors and meds, just like everyone else. Seems to be WAY too little known about causes, treatments etc. It is very difficult to accept that this is the rest of my life. Prednisone has me under control, but now symptoms seem to be extending from legs to arms. neurologist is great, but think they are limited to what everyone else doesnt know about this issue. i believe there has to be a connection to something more.. another underlying issue causing the symptoms. but there is so little research. everything is focused on diabetic neuropathy. someone should focus on those of us with no obvious or evident underlying issues. The more i research this, the more i feel like the outcast. no known cause, so no reason to find out. i think we should join together to encourage more research into the idiopathic neuropathy.. the term almost sounds like we are outcasts.

sorry if i am bringing you down, but i am very frustrated with our system.

Hi,

In the whirlwind of my medical frustration, I did find it helpful to keep a calendar of my symptoms, when and what I was taking, my activities and what I was eating. After a couple of weeks, I realized so many Tylenols OTCs could be giving me rebound headaches too and some of the ringing in my ears. And I also looked at the number of Esgic Plus painkillers that I had taken and realized that was enough caffeine to keep a horse up. Neither of which were effective pain control, by the way. Save yourself the trouble and just skip that regimen.

It helps to look at it on paper.

Things may not make too much sense right now. But Aug of '07 is enough time to see a pattern and know what you're dealing with. It wasn't until this month, (9 years later) and from this forum, that I realized I had pectorlias minor syndrome too. Now, so many things make sense about the why and why nots that I struggled with.

Keep searching. Keep asking. It can be the little morsels you find that gives you the most comfort, like "palms up" for me.

[FranksAngel]

welcome to neurotalk ... there are lots of friendly and supportive people here so jump right in and start posting ... should you need help, don't hesitate to ask someone ... we are here to help ... again ...

[Kitty]

Hello and welcome to NeuroTalk. I'm sorry that you're so frustrated with your condition. Hopefully you'll be able to find a forum that answers a lot of your questions here. There are many caring and supportive people here....please feel free to join right in.

[Darlene]

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

Darlene