Hi all,

I'm reading a lot, still, for me it is easier to read than to think how I have to explain what I want to know
But one thing keeps me thinking; how is the progression of small fiber neuropathy 'normally' (as long as you can speak of normal). In my case, one and a half year ago I had the first symptom; I asked my physiotherapist what can be wrong with my left hand, because when I dried it after washing, it was a little painfull inside the hand. After a month, my other hand did the same, after that I got burning feet (that was Christmas time 2007 and I was doing a postman job, I can tell you that this is not the most perfect job when your hands and feet are hurting). In January 2008 I visited the rheumatologist, and every month I was getting a few symptoms extra. Since two months I use non-stop medication, when I do not, I am sure I cannot walk anymore because of the cramps and shooting pain in my lower legs and I cannot do anything normal with my hands. With this medication I can do the most normal things, but I work only 3x4 hours a week and I am completely exhausted after that 4 hours working. So it's not that I am 100% pain- and troublefree, but I can handle it.
I am wondering where and when it will stop The past one and a half years there was a progression in exactly the same quickness; not very quick, not very slow but just only progression; every month I feel worser than the month before. My 25mg Amitriptyline for now is enough, but I notice that in a short time, it won't. My neurologist offered me to high it to 50mg but I don't want to; I think I better get used to some pain, because perhaps the progression never stops and I 'have to' live another 50 years maybe.
Are there any people who have the same progression as me for 1,5 years or longer? And I am wondering another thing too; I have most pain and other troubles in my hands, during the day it is ok, but when I do something a little different, like using a tallboy (like in an office) or using a shopping trolley that feels a little different than I am used to (I mean another grip) I get lots of pain. I guess my legs will have the same problem when I will do something different than normally, but I always walk at the same way so I cannot test this.

Oh PS: I have Tramadol 100mg TR for the bad days, I thing I use this max. twice a week.

Hi, i am wondering what are they doing to try to find the cause of your problems ? the progresion & severity of symptoms can depend on if they can find the culprit or not, in the first 6 months of my symptoms i was on 150 mg amitriptyline at night 25 mg in the mornings plus 300 mg x 2 day of slow release Tramadol just to make life bearible, i got lucky and found this forum which in turn made me find a good neuro that found the cause of my nerve damage, it is very important to find a neuro that specializes in neuropathy, at least your got more of a chance in finding the cause, hopefully.

Brian

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