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My PN is better'n your PN! Naw, naw!
Neuropathy | Last Active: Feb 22 11:48am | Replies (17)Comment receiving replies
Good morning, Suz (@db72)
Your PN sounds a lot like mine: idiopathic large-fiber polyneuropathy. However, you're having to put up with symptoms that I'm not. That's another part of the madness of PN: Why, if two sufferers diagnoses appear to be a match, should one sufferer be plagued by vibrating sensations and tinnitus, while the other sufferer is not? Maybe it's only a matter of my not having progressed to that stage of my PN. That's possible. I am honest enough and realistic enough to say that it is possible. What you're experiencing may be what I'll be experiencing a year or two from now. You mention at one point having to manage one of your symptoms for something like for 20 years. By comparison, my PN is a mere babe in the woods. That's a word to the wise to all of us with PN––no matter what kind of PN––we'd best be prepared for "whatever."
Suz, I wish you the very best! Stay strong.
Cheers!
Ray (@ray666)
Replies to "Good morning, Suz (@db72) Your PN sounds a lot like mine: idiopathic large-fiber polyneuropathy. However, you're..."
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@ray666 thank you Ray for your kind wishes!
One more thought. I think one of the reasons two people with what seems to be the same diagnosis may have quite different symptoms might be due to the cause, and also to other underlying conditions. Plus we’re all different, right? After doing all the usual investigations as to the cause of mine, it was classified as idiopathic, meaning of course 🤷♀️.
That said, when I first became extremely ill 40 years ago with an Epstein Barr Virus infection that turned into Chronic Fatigue Syndrome, I was bedridden for the first several years and have remained disabled ever since. The virus attacked and caused damage to my nervous system from the very first day. I was healthy as a horse the day before I got sick. I’ve had vibrationing sensations in my legs (and many other symptoms) ever since then to some degree. But over the last 20 years the numbness, tinnitus, balance problems gradually set in and progressed.
My neurologist believes the initial EBV infection triggered an autoimmune response resulting in ME/CFS and later the advancement of the PN. A lot of that is speculation but it’s based on a lot of good research opinions.
All that to say, I don’t think you should worry that yours will necessarily follow the same course because mine really began 40 years ago with a virus. Plus I have 2 autoimmune conditions, and autoimmunity runs in my family.
And yet, we both seem to have the “same” diagnosis. I think there’s just so much they really just don’t know yet about PN and it’s many different causes and forms.
Wishing you all the best as well!
Suz