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 (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.

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!