been forcing my way through the days…..
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AnonymousJune 29, 2007 at 1:45 pm
Not quite sure what’s up w/ me, but for the last week I have noticed flare ups of nerve pain, shocks, tingling, a muscle weakness/fatigue that comes and goes, and my jaw looks slightly swollen. I have been having lightheaded attackes for 2 weeks prior, but now they seem gone. I have started back on my neurontin, but i am gradually increasing. Also, I cant see my new neuro until the end of august. UGh. I have a stress test next week. I am so tired too. I thought I was well enough that i would not experience any more residual flares, I guess not! Hoping to be better by the 4th. And happy 4th to all!!
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AnonymousJune 30, 2007 at 3:19 pm
Hello Cara,
I don’t know if you have GBS or CIDP, but if it’s CIDP, I was wondering if you are getting IVIG’s or PP/PE as a maintenance, like once a month or every two weeks. I have CIDP and some doctors will just do an aggressive series, then stop it and wait for you to tell them how you are doing. If you are not on a maintenance, maybe that’s what’s wrong and you need it. Sometimes we just overdue and push ourselves WAYYYYYYY too much at trying to have our “OLD” normal life.
If you are still not feeling better, call your doctor and tell him/her it’s an emergency, you have to have an appointment MUCH sooner. ALWAYS listen to the way you feel, go to the emergency room if that proves to be necessary. -
AnonymousJuly 2, 2007 at 8:34 am
Thanks for the replies/well wishes. My dx is gbs. My weakness is more like an overused muscle fatigue, I can still go up steps, lift things, but not without making me very tired. I tried to lay down yesterday as much as possible since I am back at work today. I still feel very drained. I am going to see my PCP tomorrow.
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AnonymousJuly 2, 2007 at 12:04 pm
oh I also wanted to add, I am taking a last minute flight-vacation next week for 5 days to myrtle beach SC. my kids are down there for 2 weeks with my in laws who have a 2nd home there. I think that’s what I need, a big rest, sleep late, etc. will anyone be in the area??
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