Relapse, suddenly feeling very sick
AnonymousAugust 9, 2011 at 3:20 pm
Had been feeling great lately, able to exercise and walk with cane almost a mile everday. The best I’d ever felt since getting sick. Then suddenly two days ago woke up with back feet, leg and back pain and started to go down hill fast. Today feel terrible, weak, just generally sick. Called neurologist and am waiting for return call. Has anyone had this experience? Would welcome any response that comes close. Thanks
AnonymousAugust 10, 2011 at 4:46 am
Thank you so much for the education. I mean that sincerely. Of course it makes perfect sense. It’s fatigue I’m feeling and it may be the resualt of overdoing it. It feels as if I’m walking with shoes that weigh 10Lbs. I’ve also felt very tired, slept a lot and just did not feel recovered. But it’s likely to take a few more days of rest and then doing a bit less.
I’m confused by the comments my neurologist makes and should require a more consise explanation. My understanding is that antibodies in my system are attacking the myelin insulating the nerve as if they were foreign invading antibodies and causing peripheral nerve damage which leads to weakness of legs and arms, inability to walk well, and loss of deep tendon reflexes. The plasmapheresis treatment helps in removing six pints of plasma and those attacking antibodies (among many good ones) allowing the myelin time to rebuild itself. It used to take three or four days for this to happen, and I would feel stronger all around, but lately it seems to be occurring much quicker. I don’t understand that, i,e, why should the Plasma Exchange be working so much faster? Could that be that my bone marrow is porducing less of those attacking antibodies? I’ve also been told that this rebuilding of myelin can continue unless the root of the nerve is damaged in which case the myelin cannot rebuild itself. Does any of this make sense to you? Then again I’ve been told that CIDP is a chronically relapsing disorder. There is a remission and then a flare up. I seem to get better for six weeks or so and then have a flare up as the one I’m experiencing now. I think a Flare should be differentiated from a relapse, right?
To confuse me even further, I seem to be having MGs symptoms. In fact my condition started out as an inability to swallow and I very gradually became physically weak, which is consistent with MG. So I appear to be somewhere between the two. If you can see your way to clarifying any of this for please do so. I would be very greatful. Thanks again.
AnonymousSeptember 4, 2011 at 10:41 am
[QUOTE=Gabriel100]Had been feeling great lately, able to exercise and walk with cane almost a mile everday. The best I’d ever felt since getting sick. Then suddenly two days ago woke up with back feet, leg and back pain and started to go down hill fast. Today feel terrible, weak, just generally sick. Called neurologist and am waiting for return call. Has anyone had this experience? Would welcome any response that comes close. Thanks[/QUOTE]
I have had this experience twice since I have been home from the hospital (home a week today!) Yesterday, I was up with my walker and did a little bit more than I should have. I over did it for sure. Before it was bed time, my feet and legs hurt. Recently, the pain has been radiating up my back. Within an hour, I had lost complete feeling and movement in my feet and legs and thought, well, I’ll give it until Tuesday. Today, I woke up and have feeling and movement again, but it just isn’t normal. REST! Maybe you over did it? I know it’s been a few weeks since you’re original post … how are you feeling today?
AnonymousSeptember 10, 2011 at 9:08 am
Plasmapheresis doesn’t remove “all” the bad guys each time.. The more plasmapheresis treatments you have, the greater the odds that you get more of the “bad ” guys.
When you do your next research, check out “schwann cells”. They actually rebuild the myelin around nerves.
AnonymousSeptember 10, 2011 at 9:34 am
My dog had a minor crisis, sorry for the two posts,
Liz, who used to be on the forum all the time, looked at CIDP as a “bad” army hunting down the myelin and destroying it. IVIG and Plasmapheresis work a bit differently, but they both try to get rid of the “bad army”
schwann cells are part of the “good team” that rebuild myelin. But it takes a lot longer than 3 or 4 days to repair the damage. You probably feel better because the “bad army” is smaller and doing less damage. You are able to recover quicker, but the deep damage still takes time.
Unfortunately, if there is only 1 T-cell that is coded to destroy myelin, it will make the call to produce copies that do more and more damage. But at the same time, the schwann cells are doing more repair.
So you can see how there will be swings from good to bad and from bad to good from time to time. It is just a curve that goes up and down. Give your body time to recover when it needs it, and do what you can when you can. Keep on doing the research, you are on the right path.
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