how long
 

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.

About the same
 

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

Rina
 

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. :rolleyes:


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...

about me
 

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.

My first memory was that of my hands going numb, to which my doctor diagnosed carpal tunnel, put me on an anti-inflamatory, along with hand splints 24 hours a day for 3 weeks--that was 9 yrs ago. A yrs or so later, I complained to the same doc that now my toes are all going numb at once too and he said, "It's the same nerve connected to your hands, there is nothing we can do, take anti-inflamatory meds!" Seven yrs ago I found I had celiac disease and went gluten free, since then I have had different numb areas, buzzing areas, painful joints, etc and am seeing a neurologist now. He did the brain MRI, cervical MRI, EMG--my brain came back normal :eek: (imagine that)I do have a herniated disc at level C5-6 in my neck, PN in both hands, pinched nerves in both wrists, to which he says, "The only thing I can do is to give you an RX for hand splints!" Then he added that I probably have small fiber neuropathy in my legs and feet, but there is no test for that as of yet.

I think much of it is just a guessing game.

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

In addtion to what I have mentioned above - I did QST (quantitative sensory testing) - which come out clear, CT and MRI of the brain - which also come out clear. My neurologist doesn't think that I have to do the skin biopsy right now, no one has mantioned the sweat test. So, I think as someone wrote that guess is the name of the game and maybe they are waiting to some proceeding or recovery. That's why I'm so interesting on how long it took you to be diagnosed. and since there is nothing to do - no one of the medical care really care about me. We have here a very good doctors, but they are still humen beings ....

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. :D

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

HI Rina!
My first memories of my Neuropathy was achy arms, shoulders hands and legs....and an over all feeling of tired/weakness. I think I had this for almost a year prior to my first dr. appt for the pain.....which was in Feb. this year. My dr. thought I was just depressed and put me on Cymbalta....which really hurt my stomach because I have Barrett's Esophagus. My next step was the best step I've taken....I saw a Rheumatologist. He started doing all kinds of tests and blood workups. I had CT scans, MRI's of every part of my body and brain and a nerve conduction test. Everything looked ok......except for some Arthritis. Finally he scheduled a nerve/muscle biopsy and that showed that I have Chronic Axonal Neuropathy. I've been on a roller coaster since trying pain medication. I tolerate Lyrica well.....but it's worse side effect is rapid weight gain.....which I hate! So I've been trying other pain meds and now I'm on Balacet 325 and Hyrodrocodone. I'm also having IVIG infusions. I just had my 5th last week and they are starting to help a little. They are VERY expsensive and I'm lucky that my insurance is covering them.
I hope you get your Neuropathy figured out Rina soon! It's sure not fun not knowing what your problem is and knowing you are in pain in the mean time!