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

I was mis-diagnosed, and ignored - for probably 4-6 years, before I was properly Dx'd - in 1999-2000

I'm so sorry to read this!

I was upset when I failed to get proper treatment for a year... I felt it impacted my improvement - not in a good way.

But... see for me things changed a great deal when the holisitc M.D. I saw gave me the prescription for a shot a day for a year...

I so wish you could get a lot of B12 and see if it helped you equally... maybe "equally" is the worng word. But more than you have been helped so far, and more than you were hoping was possible.

I had absolutely no expectation that there was any way I could get rid of the PN in my thigh that was sooooo bad. But then after a few months of a shot a day, sometimes two... it was gone...

though... right this minute it's twinging because sometimes these forums can be a bit stressful.

The thing with taking enough sublinguals to match the amount of B12 I had, is that it would get pricey... to get as much from sublinguals, I think you'd have to take 6-12 of the 5mg Methylcobalamin sublinguals a day...

I did send that amount to a couple friends with Parkinson's for a couple months, and to one woman with Fibro... The fibro lady never said she got it... so I don't know if she experienced any good effects at all...

The Parkinson's people felt it helped a lot with clarity of thinking....

But then I had all the stress with my condo and I didn't continue sending it...

From the time I went to a doctor with the first symptom bothered me enough to see a doctor, to the time I was diagnosed by a neurologist, years elapsed. During that time I progressed from moderate malabsorption of B12 to severe malabsorption, and from trivial symptoms to increasing life-altering disability.

My damage was allowed to progress to the central nervous system. The PN portion of the damage was gone within a year, except for the malfunction of peripheral nerves due to bad signals through the central nervous system.


rose