Wow than my 25mg is just a candy.
Actually I have the best neuro in the Netherlands; there is one hospital specialized in SFN and accidentally it is the hospital I visit. In Academic hospitals here it's normal that real specialists are supervising the specialists that are in education (the 'students' are only studying for neuro, they are still real doctors, not that you think that a girl of 18 treats me ) Two of that educating specialists are specialized in SFN and last visit I was offered to speak to one of them the next time. That's quite special; in 'normal' cases/with average diseases you have to stay with your studying doctor and that's it.
I was tested on many things, I still have to take the English protocol to check if really everything is tested but I think so, so I guess in my case it really will be an idiopathic SFN. And one day the progression will stop, hopefully.

This can be due to carpal tunnel. And it can be due to hypothyroidism.

My PN started in my hands and moved to my feet, and was severe. When I became pregnant at 34 I became disabled in my 5th month. I had EMG then showing severe loss of hand functions. After delivery it improved, and I didn't need the offered surgery. The hypothyroidism was still there, brewing and eluding tests. It wasn't until my mid 40's that I had some minor blood work anomalies and was given a technicium scan.
That showed a damaged gland, and FINALLY the doctor ordered levothyroxine for me. This fixed my hands and feet about 90% but I still have flares.

When people have low thyroid this causes the body to deposit in the tissues a substance under the skin, and under the ligaments at the wrist and ankle. This compresses nerves and causes alot of pain. It is a form of mechanical entrapment. So I always encourage people to have thyroid checked carefully, because it can be hard to pinpoint using blood work only --like what happened to me.

Some physical signs to look for
orange skin tone on the palms and soles of the feet
loss of hair, and body hair.
cold intolerance
brain fog--difficulty thinking
very dry skin.

Sometimes these signs are present and the blood work is marginally normal. I'd suggest radiouptake isotope studies to see the gland in action.

Thank you for answering.
I looks in my papers, but my TSH has been checked. However, I will discuss this at my next appointment with the neuro.

" I'd suggest radiouptake isotope studies to see the gland in action"

Is there any blood test to do before the isotope study?

At Wikipedia (the Dutch one...) I read that there are several bloodtests that can be taken; T3, T4 and TSH. TSH was tested in my case and it was allright.

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/