My husband has been going through all this as well. Had all your testing done as well as many other tests and still no answer as to how he got neuropathy. HE did have 2 back surgeries about 9 years ago and every doctor we have seen since keeps telling us that there is no relation between the two. We live in Boston and have been to Mass General and Tufts numerous times and have seen some of the best doctors and yet STILL there is no reason why he has it. He is also on Lyrica and Cymbalta. Sadly, those are not as effective any more and there isn't anything left to take but to start in with opioids which we prayed to hold off on as long as possible.
I joined this group hoping to find any suggestions, answers, anything!!!!
It's an awful condition to have. I've been watching him struggle through this for years and we too worry about the future.
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Originally Posted by Joe2324
I am desperate for help. Right before I turned 40 I started experiencing all kinds of Neurological sx. First started with an overactive bladder (which at the time was attributed to prostatitis), then six months later symmetrical hands and feet started experiencing pins and needles, muscle twitches, nerve pain.... fast forward its been 3 years since then and I've done all kinds of tests but still don't have answers and my neuropathy has gotten progressively worse.
Current neurologist has put me on Lyrica 75mg 3x daily, which hasn't helped much and seems to have given up looking for a cause and is content leaving me in pain. Primary Doc thinks its "anxiety," ... or some sort of psychosomatic response which is complete BS to me..
What do I do.. I have no answers, should I push for further testing? Is there anything I can do to alleviate this pain?
Tests done in the past 3years: Full blood panel - all clear. CT scan of bladder shows nothing. MRI twice of head and full spine with contrast showed no lesions for MS. Full Rhum panel -- all clear to rule out obvious autoimmune stuff like lupus, vitamin deficiencies. Diabetes also ruled out. Neurologist suspect small fiber neuropathy and did skin biopsies that also came back normal. EMG's also normal. Gene test to look for some known hereditary neuropathy genes.. also normal. Full kidney workup - also normal.
I haven't tried: Lumbar Puncture, infectious diseases, naturopaths/, heart issues, taking out my teeth that has a gold filling/ root canals (anyone see that Netflix special on teeth will know why i'm kind paranoid about this).
Forgot to mention that prior to all this I was on Ambien (Zolpidem - 10mg nightly) for almost 8.5years taken as directed. If anything, I would suspect that the medications gave me neuropathy, but no doctor seems to believe this and I've been off the meds for 3 years and things have just gotten worse - in addition I find little stories out there of ambien and neuropathy.. but i'm throwing it out there cuz my gut tends to lean in that direction. One neurologist i saw thought the meds could've been masking a condition that was brought out once i quit them.. but he admitted he was just guessing.
I've seen 4 different neurologists, rheumatologists, nephrologist, 3 GP's, a psychiatrist, acupuncturist, etc... NO ANSWERS NO HELP.
Any suggestions would greatly be appreciated. Both in chasing down a cause (for me this is important cuz if there's any potential to address the cause there could be a chance to slow progression), and/ or alleviating symptoms.
On top of it now I'm battling depression as a result of this disease (not before it) as I worry about how I'll be able to take care of my daughter who is only 5 if I can't work much longer/ end up disabled. Things have progressed from annoying sensations to severe pain quite fast. No one seems to understand what's going on and I feel incredibly alone in all this.
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