Hello,
As I am also from Holland, and recently diagnosed with sfn, I would like to know to which specialist in Maastricht you have been. I do have a lot of other questions and would like to get in contact with you. I have these strange sensory and feelings feelings already for years. It took me 5 neurologists to be finally diagnosed with sfn by taking a skinbiopt. The next step will be to go to Maastricht, a specialized medical center for this disease.
I am reading a lot now on sfn, and come across new treatments like low level lasertherapy. Anyone any experience? Also supplements like alpha-lipon acid.
Els

Hello trautels and welcome to NeuroTalk.

I don't know if you realise or not but this is quite an old thread, with no posts since 2009. I see that you hope to get a response from FlyingDutchWoman, but sadly she has not logged in here since 02-26-2010, so you may not get answer from her.

I do hope she sees your post and replies, or some-one else from your area does. Welcome again. I hope you get the answers that you seek.

Hello Mrs D,

May I ask you how long it took for thyroid meds to kick in and help??

The Dr said my PN is from hypo-thyroid, and I wonder how long it takes if meds are going to help.

thank you

Hi, I am really interested in the progression of small fibre PN, I have it, in my legs from knees basically to toes. I am noticing other things now, i feel like i have shin splints often, my knees feel really stiff and painful, like the joints are hurting, i am taking a bunch of things, including gabapentin, as the lyrica sent me nuts. Mine is supposedly from B6 toxicity, but i was on humira at the time and having a lot of problems with it, and i dont know if that is playing in the mix or not. I am also on cortisone. I just wonder where does it progress to, and how long it takes. I am shocked at peoples stories, I had no idea what PN was 4 months ago, i did have lots of indicators but i didnt know what they were and with regard to the humira was having a lot of trouble. I feel i have been insane at the start with this, and it was grief, I know that now. No one really tells you how you mourn the loss of bits of functionallity and when you are not old, you are not expecting it. My heart goes out to the younger people, at least I am 59 and had some life. But to be young and in so much pain. The other thing that interests me is my familty dont really believe i have any pain, this bamboozles me, and annoys me too. I dont know what they think i am doing taking all the meds i take now for pain... best wishes to all of you SM PN sufferers, i am with you... xxxx

I have had SFN for 6 years but was not diagnosed until 3 months ago. My symptons are the same as yours. There are a number of causes of SFN and apparently you need to find the cause in order to determine the treatment. I have been given 4 medications so far and none has given any relief. As of now it could be negative reactions to Acid Blockers, Statins or nerve compression in my lower spinal nerves!

I have yet to be told the cause, so I am trying to find out so I can give my Neuroligist some clues. Sometimes you have to be bold to get the doctors to react since they only take about 10 minutes to help you!

I can't answer what the progression is, it all depends on the cause.

Check out the following site to get some idea what your cause may be related to.

http://www.livestrong.com/article/15...al-neuropathy/

I have no idea on how to start a thread or how to get anyone to read what I have previously posted. I am sorry that I put this in the reply section but I need some help with this!!! Help!! Cbar

Hi Cbar, I think our FAQ section will be helpful for you -
http://neurotalk.psychcentral.com/fa...b3_board_usage

The NEW THREAD button is at the top of each forum page only.

Here is the index page for PN:

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

This is the link for the list of forums:
http://neurotalk.psychcentral.com/index.php

You can click on any link, like the ones above, on any post.

If you get "lost" click on the top of the page..."NeuroTalk Support Groups" and it will take you back to the index page.

Websites like this have quite a few clickable places...you can just put your cursor over any major word in a heading and see if it works. To go back hit the back arrow of your browser, or go back the the index page. Once you do it a few times, you'll get the knack.