Quote:
Originally Posted by en bloc
Northerngal is absolutely right...your GP can Rx the Prednisone. When I mentioned specialist, I was meaning if you were to take long term...so specialist would know what to look for in regards to monitoring damage and other side-effects.
But for initial trial to see if your neuropathy is inflammatory by all means, your GP can do the 5-7 day course. It is super inexpensive and very low risk of problems (with just a short term course). You would at least know one way or the other whether your neuropathy is inflammation based. If it is, then you can see specialist to discuss and assess whether long term (and what dose) is appropriate.
What did your neuro say today? I don't understand why he hasn't considered short course of steroids to check for inflammatory based neuropathy.
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Hey, All... really, such good advice from you all to Canagirl and anybody else who experiences the misery of body-wide neuropathy. I have a few comments I just had to reiterate. The first is, one can't "cause" central pain syndrome. You positively can't do anything, even unwittingly, to cause this. I have gone to a well-recognized pain management doctor and seen a zillion specialists. The central nervous system responds to an insult, maybe prolonged peripheral nerve damage with associated pain, illness, stroke, or in my case a virus, that launches us into an errant pain cycle/response. So, any guilt or anger directed towards yourself is ill-placed. Sure, be angry that this dreadful condition has befallen you, but blaming yourself is wasted energy.
Second, fight as hard as you possibly know how to not let this steal away every bit of the life you have and who you are. It's been through pure personal steel and the grace of God that I have retained my employment and continued to be a single mother to two young children. It's amazing what you CAN do when you have no option, when you're desperately needed by those around you, and when you muster the determination to keep on living, despite the days when it's damn hard to get out of bed.
I remember when it all started with me, the panic and fear. The burning and paresthesia and muscle spasms spread through me like wild fire until, yes, it is absolutely everywhere, including my face, mouth, gums, teeth, throat, inner ears and nose. So, I really get it. I appreciate the other poster's comment that she thought she was having a stroke. I feel that way every once in a while still because of the intense paresthesia in my face, and my only consolation is I wake up every day still here... no stroke. Scary as hell, though! Even though the pain is still intolerable, at least I'm familiar with it. I'm on 1800 to 2100 mg. of gabapentin, and so far it's been the only med I've been able to tolerate, even though it definitely has it's side effects. I'm currently working through some other pain med options, but no luck yet. The balance that I need to strike between medication side effects and maintaining an active life is hard.
I kept hoping for the day this would go away, but I realize that isn't likely after many years now. Hope still creeps in every once in awhile, but at some point I realized that waiting to get better was getting in the way of coping with reality and living life, albeit a dramatically different life. Maybe you could just set small personal goals every day, especially goals associated with your child and husband, that could restore routine and even make you smile once in a while. Beyond the grief and fear and panic of what's happened to you (to several of us here), there can be moments of happiness.
And finally, my pain management doctor did make reference to this "burning out" possibility, too. He said that sometimes, with time, maybe significant time, the brain actually can rewire around whatever "misfiring" is occurring... sort of a self-lobotomy. Definitely not a sophisticated summary of what he really said, but hopefully you get the point. I can only hope.