after the symptoms started, it took you to be diagnosed with PN?
I'm 2 years with my symptoms and don't have yet diagnosis. My neurologist think it might be SFSN, but he is not sure, yet. This is so confusing....

All the best

Rina

2 years for me, but only 3 months from when i first went to the doctor for it.

Rina,
I was diagnosed in the very beginning of the pain..but it was a pure speculation diagnosis because none of the tests had proved it. It took going half way accross the country to Mayo Clinic to get the firm diagnosis.

Don't give up yet.

Billye

I have had PN since the 6th of March 05. I haven't had a test yet that has definatley confirmed the diagnosis. I need to have a skin punch biopsy,but it's not offered anywhere,and we don't have a Mayo clinic equivalent over here.

I do see the only small fibre specialist neuro in all Sydney,and have had extensive tests that have all come back clear. She diagnosed me with a GBS like syndrome due to medical history, presentation,patchy recovery,and ofcourse medical history.

With so much problems I have had with my head which include flushing,pressure,headaches,cranial neuropathy,dry eyes, some odd breathing issues like apnea episodes when I am awake, I often woder if this might not be partly attributed to a CNS problem, at least in part. But neuro says no.

Hi Rina

I first started to feel a tingling in my toes which was put down by my doctor as likely B12 depletion. After the tingling became worse (about 2 months) I was sent for my first EMG when it was suggested that I probably had a neuropathy. After other tests it was quickly “confirmed” that I had sensory idiopathic peripheral neuropathy. This was about 6 months after my first signs.

Because I knew nothing about the disease then I just accepted what I was told by my neurologist and “took the pills”. I guess a lot more should have been done then to determine the cause but that was 15 years ago and the doctors knew about as much as I did.


Perhaps you can tell the folk in the know here a little more about yourself and the tests you have had. There is a lot of help to be had here.

Best wishes


Tony

I was diagnoised with PN fairly quickly once I went to the doctor. I put it off for years thinking they would just tell me it was my weight causing my pain in my feet. Once I was diagnoised it took a good 1 1/2 years for them to find a cause. Lots and lots of blood tests, several MRI's, Sensory and Motor Nerve Conduction tests and a Lumbar Puncture.

After 3 months of getting mucked around with 7 GP'S and one rheumo that were all hopeless, then i got to see a neuro that knew his stuff, he told me on my first visit he suspected PN, after blood tests and a EMG & thermal testing, i think it was just about a week later he then confirmed it, small fibre damage with some large nerve involvement and told me the causes, i was so lucky.

Brian

Rina,

I first noticed a small numb patch on my arm in 1998, I then had other symptoms in 2001,numbness in left side of face every now and again.I went to see a neurologist who proceeded to stick a pin gently on the surface of my face,which I obviously felt, she then said she didn't know what on earth may be causing it, I had an MRI of the brain which came back clear and it was left at that. Then this year I went to see another neurologist as the symptoms have progressed throughout the following years and I have had no diagnosis as yet, have had some blood tests and an MRI of my brain and cervical spine which have all come back clear, I am awaiting an electrical test and results from some more blood work. One thing I have found a bit disturbing is that on the second visit this year to see my neurologist (7th august) he is already talking about managing the symptoms with amitriptyline,im really hoping this doesnt mean that he is going to give up finding a cause if the next set of tests come back clear...

It started one day at Sep.2005 with a tingling in my toes. after several days I went to my doctor who send me to some blood tests, the regular one. Everything was normal except of the Iron. - So, he tought ot might be the anemia that cause to the tingling. I sturted to take vitamines and Iron. and after 2 monthes nothing improved, but the opposite. it spread to the all sole of the 2 feet. and to the all body. After 6 monthes I went to a neurologist who said it might be PN and sent me to NCS which comes normal. and he said - it is nothing. 2 monthes later I went to another neuro' who also claim everything is OK. The 3rd neuro' sent me to several blood tests including immuno' ana, sugar and many others - everything came normal and also another NCS and termal test that also came normal. - this was 1 year after onset. now I'm 2 years after - with burn soles and numbness all over my body.
The last neurologist, said it might be PN, but he is not sure yet because everything came out - normal. So, maybe I'm crazy? imagine all this feelings?

I hope for recovery....

Thanks to all of you

Rina it doesnt sound like you have had any tests for small fiber neuropathy which would not show up on an emg/ncs. Tests for small fiber neuropathy include: sweat test, quantitave sensory testing and skin punch biopsy which actually counts your small fiber nerves and looks at their condition.