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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-01-2008, 10:38 AM | #1 | |||
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Senior Member
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Hello all! I'm sooooooo depressed today. Last week I was feeling a little rough so I called my neuro to tell him what was going on and the next thing I know I'm being admitted to the hospital for a week long stay of plasmaphoresis and then IV IG and I STILL DON'T FEEL GOOD! I ACTUALLY FELT BETTER BEFORE I WENT IN! I've been on the sofa for the past 3 days just feeling sorry for myself, too weak to do anything, worrying about EVERYTHING and praying for a miracle..........MY hemo wants to put a permanent line in my arm cuz' he thinks I'm chronic, but I refuse to believe that. How can things have gone downhill so fast? I was feeling great for months! Now I'm scared to be alone, scared to do anything, for fear it will wear me out too quickly and I'll have to go back to the hospital - I was never afraid of anything before I was sick. I just took for granted that I'd always be healthy............Sorry for whining - I just don't know where to turn to right now........
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08-01-2008, 11:02 AM | #2 | ||
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Junior Member
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Sorry to hear you are so miserable...your feelings sound well deserved.
Don't know what to tell you, as nothing really works for me, either. I'm not "as bad" as I was a year ago, but still no healthy person would want to trade with me, even for a day. For me, no matter how wonderful the treatment, or how MUCH of the "wonderful" treatment I'm on, I will still flare up during hormonal shifts (ovulation and menses.) There's no getting around that and I must say, I'm a bit curious as to how life will be after menopause (which is still a bit away for me...) Hope things get better for you very soon! Missy |
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08-01-2008, 11:21 AM | #3 | |||
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Wise Elder
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I am so sorry your not feeling better. You've had a rough ride these past few weeks. I am praying that this is a rough patch and you'll be feeling better in time.
__________________
. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt |
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08-01-2008, 04:56 PM | #4 | |||
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Senior Member
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Thank you! I do know it will get better in time, and I do know my doctors are doing everything they can to help, but it just gets so frustrating @ times........Prayer and lots of luck will (and faith ) will get me through........though I am so thankful I found this site - everyone is so kind to me. I really appreciate it!
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08-01-2008, 11:35 PM | #5 | |||
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Member
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Hi Erinhermes
sorry to hear you're feeling down. Its frustrating when you do so much, or have so much done for you, and you don't get any results!! I'm going through a period of my mg being bad, and don't know why, and dont want to tell my neuro, cos he'll just want to up my prednisolone!!!! I still think my idea of selling our mg on e-bay is a great idea, if only we could all dislodge it from ourselves we may have a chance Hope you soon start to feel a bit better, take care redtail |
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08-02-2008, 08:53 AM | #6 | |||
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Senior Member
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The irony of that whole situatuion is that I called my neuro to have him up my Prednisone and he decided that at this point plasmaphoresis would be more helpfulTHen I asked him him if I would have a PICC or a central line and he told me PICC so that's what I was expecting - not a cath in my jugular - I tell you I went a little crazy for a few days after that - screaming @ my hubby (cuz' he knew), being mean to nurses, crying, and not sleeping - I was like a mad woman - I'm so ashamed.I've just always had a fear - ok phobia - of needles and since being diagnosed I've been bled dry...........OK, enough about me - how are you? I'm sorry to hear you're feeling rough - that stinks. Your idea of selling mg on ebay was funny - I wish there were buyers out there.Maybe the heat is effecting your mg..............
Is it super hot there? We've had a huge heat wave here in Texas, and I think that's what is making our mg worse - my neuro won't let me go outside in the heat......... When you get a chance, drop me line and let me know how you are feeling.......Take care! Erin Quote:
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08-01-2008, 04:53 PM | #7 | |||
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Senior Member
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Thank you! I know I must sound like a "pitiful pearl", but I jsut keep hoping/praying for a miracle.....The problem is I just keep getting sick since my thymectomy and I know it is hindering my remission, plus no one wants to hear that they may be chronic....When were you diagnosed? Have you had a thymectomy? I had one b/c the doctors pretty much told me that was my only hope for a "normal" life.......it's just so darn frustratingThe meds I"m on keep me in a permanent state of menses and I have terrible endo, although (God willing) I'll never undergo surgery again - it's just too darn hard. I'm on antidepressants though they don't seem to be working for me and I can't stand the side effects. How old are you? It's just so hard sometimes, though I do know I'm lucky to have my support group. i'm so thankful I found this site cuz' everyone is so kind. Take care! Erin
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