Quote:
Originally Posted by Joe2324
Thanks for the replay Snoopy
I did see a psychiatrist and a therapist to rule out some sort of conversion disorder in my mind. Unfortunately, neither seemed to help.. only suggesting "well it could be" then " well what does your doctor say" and then prescribing Lexapro, which i took for several months before quitting. Talk therapy for months went no where.
I will try another psych just in case, but like I said, I highly doubt its some sort of conversion disorder - which to me is even more rare than peripheral neuropathy. And if it were some conversion disorder I don't see how it would slowly progress in typical stock and glove presentation, get worse slowly over time, and not respond to pain meds/ psych meds.
As for MS: when my sx first started happening (tingling in feet) I naturally started reading about MS and yes, sx did progress after that.. but i think it was just the timing.. sx onset, read about the sx, then progression... I don't think by reading about the disease I somehow converted it to some physical process.
My research has shown me that many MS patients sometimes have to wait years before diagnosis and sx can long precede imaging... so while Im not officially "diagnosed" by a neurologist .. i did have one GP tell me that she thought it was early stage MS just not showing on MRI's yet... so I haven't ruled that possibility completely out for now.
My urologist says he doesn't see anything on my imaging with respect to the prostate and frequent urination, which leads me to believe it is in fact neurological. From what I've read many peripheral neuropathy patients suffer from an overactive bladder.
I have applied to Mayo clinic but don't know if they'll see me or when. Meanwhile all I have is lyrica.
I've joined a facebook group with other peripheral neuropathy patients, and many of them were given the idiopathic label.. they seem to have accepted it and given up on any hope of slowing progression/ addressing a cause. I fear I may end up in the same boat.
For some reason this forum seems to be less active than I'd hoped, with some correspondence taking months/ years to transpire, so I'm thankful for any response. If anyone knows of other forums/ groups where I might get more feedback/ help I'd appreciate that too. I figure all I can do right now is start to crowdsource help and chase down leads I may not have considered... that or wait till my sx really are severe before doctors want to do anything more.
Regardless - thanks for the reply.
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Joe,
You need a true medical detective to help you out on this. First, you need to figure out if it is neuropathy or MS. Honestly, I would go with the neurologist's opinion on this. It seems like you have classic glove and stocking issues with neuropathy ( hands and feet ). MS is a possbility but it tends to manifest itself in episodes more so than a grinding progression of the symptoms getting worse. As for a conversion episode, neuropathy is actually much more common than someone having a psychological episode manifesting itself in the way you describe.
As for the skin punch biopsy, I would be very curious if "normal" just means that the Intraepidural Nerve Fiber number had not hit an abnormal value. If that is the case, then there could be other findings like nerve fragmentation or swellings that could indicate a neuropathic process. It might be very interesting to see the actual text of the report.
If you want next steps, I think that you have a already done the first thing I would suggest which is to go to a research center like the Cleveland Clinic, Mayo Clinic, or Johns Hopkins. You will have a better chance of finding your medical detective at one of these organizations. Second, you should get a hard copy of all of your test results and cross check with the medical literature to see if anything stands out. They are finding out interesting things like elevated folate levels or low serine levels are associated with neuropathy that weren't covered in medical school for these neurologists. I did just that and found that I had abnormally low serine levels that were likely contributing to the production of neurotoxic deoxysphingolipids. I now supplement with L-serine and use oxybutynin and have seen some positive changes in my neuropathy. Finally, there is some hope on the horizon in the form of pirenzepine ( for nerve regeneration ) and VX-150 (for neuropathic pain). You can Google them to feel a bit better about the future. Good Luck.