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-   -   What's wrong with me? (https://www.neurotalk.org/peripheral-neuropathy/203965-whats-wrong.html)

KTMDAN 06-09-2014 11:08 PM

Thanks for your answers!! I really appreciate it!

Hopeful,

Unfortunately it sounds like we have similar symptoms. Mine I guess is progressing slowly ? every couple of days or so something new pops up.

Feet have some toe pain - bottoms feel slightly numb but at the same time sensitive. Hard to keep shoes on for long or stay standing without discomfort. Outside/tops of feet the most numb without discomfort.

Some fingertips numb now and some slight finger pain.

Starting to feel stuff happening around lower legs - tingling - slight numbness - fast shots of light pain.

I have itching around my stomach and now on both sides of my face - cheeks. Here is an odd one - sensitive around my lips and the tip/ side of my tongue is slightly numb.

Oh yea, my right butt cheek goes numbish when sitting long.

I go see my 9th Dr. tomorrow - A Neurologist at Stanford - I live nearby.

Are your symptoms always the same??

Did some of those symptoms go away and leave you with just some of them?

Are they getting worse?

How long have you had this?



I'm wondering what my future is for work - self employed in a physical job and very active - Hiking - riding motorcycles off road - mountain biking.

Are you ppl still able to do these activities in your lives or ... ??

By everything I read I would think i have small fiber sensory neuropathy?

Maybe we will do a skin test next?

BTW - taking Gabapentin for the last several weeks or so. Up to around 1000 mg per day - 3 morning - 3 afternoon - rest at night. I can't tell if it's doing anything or not?? No side effects at all either.

Thanks for everything and this sucks - you know what!!!!!
Dan

CoachT 06-13-2014 06:59 PM

Dan, Your situation sounds a lot like mine. Mine came and went for years with some symtomps like yours. Recently, it turned to sunburn-like feelings on top of all the prickly, itchy and stingy sensations and won't relent. Like you I fear the future of this condition. I don't know if it becomes disabling or not. I suppose it depends on the individual and their specific condition. I was told that it usually doesn't get any worse a couple of years ago, but clearly it has. Please let us know what your neurologist in Stanford had to say.

CoachT 06-13-2014 07:03 PM

By the way, I am on Neurontin too. 2400mg per day. It seems to turn the burn into a cold sensation. It is kind of icy hot. Very creepy. I have been teaching math and coaching basketball with this, but I constantly fear that it may not relent and continue to get worse rendering me unable to continue to work. I hope not.

rexpotter 02-17-2015 07:48 PM

Nerve Tingling
 
I had a bad fall backwards almost two years ago and now have developed this nerve thing in the last month. Sounds similar. WTF? Liver test high Bilirubin, so stopped drinking beer a few days ago.

cyclelops 02-18-2015 07:26 PM

Sounds a lot like me, 2 torn rotator cuffs, hip bursitis, plantar fasciitis not to mention my back issues....and terribly itchy abdomen, later legs.

I have autoimmune autonomic ganglionopathy. Fascial tissue is highly innervated by the small nerve fibers. They used to say that fascia had no innervation, well, they were wrong.

I am going to assume you don't have psoriasis, because that inflames all the soft tissue.

You can get a skin biopsy for nerve fiber density and an autonomic battery of tests, but for me, absolutely, the connective tissues are heavily involved. (I do have a positive ANA, however.)

bitbybit 12-04-2019 03:35 AM

Quote:

Originally Posted by CoachT (Post 1075640)
Dan, Your situation sounds a lot like mine. Mine came and went for years with some symtomps like yours. Recently, it turned to sunburn-like feelings on top of all the prickly, itchy and stingy sensations and won't relent. Like you I fear the future of this condition. I don't know if it becomes disabling or not. I suppose it depends on the individual and their specific condition. I was told that it usually doesn't get any worse a couple of years ago, but clearly it has. Please let us know what your neurologist in Stanford had to say.

How are you now? It has been several years. Have you gotten a diagnosis of cause/small fiber involvmement as well? And you have done any treatments or lifestyle changes? I hope you're better

caroline2 12-09-2019 02:17 PM

Since this is old thread, OP could be gone...but as I see it almost all surgeries can leave us with damage we never had before...lots of nerve damage for sure. I live with 9 yrs post hip replacement damage and regrets on doing it, YES.

But want to say also we humans surely do a job on beating up our bodies, some more than others, but our bodies can take just so much, at 81 I see it and feel it all.


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