Help with diagnosis - docs can't figure me out!
 

Hello friends,

My symptoms have now moved completely into my fingers, hands and arms in one weekend. Tingling, stabbing, buzzing, a "drawing" sensation thru my thumbs and fingertip pain with a "blob" of pressure in my upper forearm, just before the elbow - both arms.

My feet, calves and leg symptoms continue with all the usual, but patchy symptoms. This patchiness is what gives the 20+ docs I've seen the reason to say they can't officially diagnose me. But I know what I feel. And the circulation in my feet ankles is compromised. When I walk or move, it's fine.

My health: no RX, no disorders/diseases or CMT (I was checked for that two years ago and it was negative.) Last time I took antibiotics was almost 10 years ago. Could it show up eight years later?

Symptoms began two years ago only in my left and right ankles. Now, my entire body. I had a dental filling removed last month and the left side of my face is now affected.

When this first started, the neurologist specialty clinic I went to first said I had CIDP and started me on IVIG which I had six infusions. The MS specialist took over and said I did not have CIDP but MS. Then had another brain/ cspine MRI, LP, etc to have those come up normal. He said "you've had more testing than any other patient in this clinic and you have no neurological illness. When I asked if I had demylinating - he said" NO. You have sensitive and irritated nerves."

Went to other docs and heard virus, then no, it is not a virus because I would not get worse years after a virus.

I've been on the supplement regime for over a year with no improvement. Recently, I adjusted it based on recommendations from Mrs. D.

It feels like a runaway train. I have everything working in my favor to at least halt the progression, but on it goes. If I have twitching, about two days later, that area is numb. I'm twitching all over and now my thumbs. I get goosebumps, energy surges down the back of my legs frequently, but less than I used to. My future looks very bleak.

Everyday I wake up and believe in my body and ability to heal. I'm reaching the point of giving up. What is making my nerves fall apart so quickly?

PS - when this first hit me, I had severe aching in my arms like I lifted weights for days. The day of my worst symptoms, the nerve conduction was run and all was normal. That neurologist said I had demyelinating neuropathy. That is why every other doc who looks at me and my test results shakes their head and says I don't have it.

May I ask how old you are? Sounds suspicious. PM me if you want.

I am 51. What is your intuition?

Being your own advocate
 

[QUOTE=Eskiemom;1158060]Hello friends,

Sorry that the Drs are bouncing you around like a ping-pong ball. Many have the true DX of Idiopathic Neurapathy. You mentioned both feet were first involved, but you didn't say whether you were free of Diabetes. Good Luck, Ken in Texas.

[QUOTE=zkrp01;1158073]Hi Ken,
It did not start in my feet. It started in my ankle. Now, the inner tip of my big toe and the inner tip of the toe next to it feel numb.

My big leg areas are my outer calves - where the peroneal nerve runs which happens to end in those same areas as my toes.

No diabetes -- no issue with glucose intolerance either.

I'm 53, and all hell broke lose when I was 51. I'm very suspicious of hormonal contribution...at least.

I would suggest you get worked up by a rheumatologist for autoimmune disease. The sudden onset and presentation sound like this type of process. Do you have any joint pain, fatigue, rashes (on face, or otherwise), or dry mouth/eyes? Has anyone done any lab work for autoimmune...even just a ANA?

Also, have you had a skin biopsy? If not, you need one!

I was fully tested two years in a row by rheumatologist. Completely clear.

I have none of the symptoms you listed. I thought I had an autoimmune, but zilch on that.

No skin biopsy by five neurologists because they don't suspect small fiber based on my presentation.

How much exercise do you get?

I wasn't doing much other than general walking around for the past two years.
I was so active!
But I'm back on my bike about 10 - 15 minutes.
My real pain is my outer calves/ankles.