1. < Neuropathy

Confused and Frustrated About What Is Going

Posted by SusanEllen66 @SusanEllen66, Sep 4, 2023

I’m feeling so very frustrated right now. I’m in pain everywhere, my legs and arms are getting weaker every day and I’m not getting much help.
My neurologist said that I have severe carpal tunnel syndrome in BOTH arms. He referred me to a hand therapist. She said that the fingers on my left hand are becoming deformed from muscle and tendon weakness not carpal tunnel. I’ve got swan fingers now.

So now I’m wondering what in the world my diagnosis really is. First, polyneuropathy, or Chronic Inflammatory Demyelinating Polyneuropathy, arthritis and muscle weakness.

Anyway, I did some research on my own and I am going to go to my rheumatologist and get tested for Amyloidosis. I think that is a possibly…”I’m not a real doctor, I just play one on TV” 😉

Interested in more discussions like this? Go to the Neuropathy Support Group.

julbpat | @julbpat | Sep 6, 2023
In reply to @ray666 "Good morning, @julbpat. I've prepared just that way for my annual later day: I made a..." + (show)
@ray666

Good morning, @julbpat. I've prepared just that way for my annual later day: I made a copy of my hematologist's lab report to leave with my PCP. After another cup of coffee, I'm going to phone my neurologist's office to ask why I've not heard back from him; I sent him a copy of the same report over a week ago to ask if possibly he saw something that might have bearing on my PN. It does take a little extra effort, but I believe it's important: even though all of our medical activity is supposed to be archived digitally and available to all of our doctors, I find it still helps to hand them things like lab reports on paper. ––Ray (@ray666)

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I messaged my neurologist last week to ask a question about prednisone, efficacy, corresponding lab values, possible relation to SFN, and his response basically was "I don't know, it's confusing". That's why I asked him - it's confusing! Not a very helpful answer! Since my main symptom is pretty much constant pain, prednisone and it's magic is another whole topic for another day.

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Ray Kemble | @ray666 | Sep 6, 2023
In reply to @julbpat "I messaged my neurologist last week to ask a question about prednisone, efficacy, corresponding lab values,..." + (show)
@julbpat

I messaged my neurologist last week to ask a question about prednisone, efficacy, corresponding lab values, possible relation to SFN, and his response basically was "I don't know, it's confusing". That's why I asked him - it's confusing! Not a very helpful answer! Since my main symptom is pretty much constant pain, prednisone and it's magic is another whole topic for another day.

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I find it's a special occasion when you make the acquaintance of a clinician who comes toward you rather than backing away. It's something I've been noticing only gradually as I've progressed through this experience of having PN. If I present with something for which there is a possible solution––a broken toe or a bout of constipation––the clinician will be eager to offer a pill or a regimen of therapy. But if I present with something like PN––something currently incurable and quite likely progressive––the clinician will be sympathetic––genuinely sympathetic––but will be counting the tick-tocks until the consultation comes to an end,

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bcool123 | @bcool123 | Sep 6, 2023
In reply to @ray666 "The four words the receptionist asked me to remember? Mmm? "Don't steal the pen." Were those..." + (show)
@ray666

The four words the receptionist asked me to remember? Mmm? "Don't steal the pen." Were those the words? 🙂

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Ha ha ha! Bcool123

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