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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-20-2013, 03:21 PM | #1 | ||
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I am currently getting IVIG (thank goodness!!!).. but have been having a problem the past few months when IVIG starts wearing off with worsened abdominal/trunk weakness.. Does anyone else get this?
Most of my weakness is proximal and face. I have a sleep study scheduled, but still have about a month to go before that happens.. It's just so anxiety provoking to be so weak in the trunk - when I got admitted initially my PFT's were low, trunk was so weak, and I coudlnt' breathe well at all.. last week at my neuro apt my PFT's were great, but as the IVIG wore off I felt worse.. I feel like if I press down using my ab's that I am going to rip my muscles off of my ribs? It kind of hurts in a strange way.. Anyone else have these symptoms? Even going to the bathroom can be hard at times, then about 4 days after IVIG things get easier for a week or so.. but never "normal" |
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05-20-2013, 04:31 PM | #2 | |||
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I get the abdominal weakness as well, including pelvic floor and sphincter muscles, especially when the MG gets really bad. I usually do not have the strength for a bowel movement until I have had my morning mestinon. After ending up in the ER with shortness of breath and released, I did not have much control of my bladder for 2 days. This has been better since I have been on pregnisone.
Sorry you are having the same trouble kathie |
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"Thanks for this!" says: | bny806 (05-20-2013) |
05-20-2013, 05:59 PM | #3 | ||
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BNY806 said, "...Even going to the bathroom can be hard at times..."
Kathie said, "... did not have much control of my bladder for 2 days..." As 'those guys..' say in eastern Canada, "Good on YA!!!" In the past, this topic was avoided like the plague! About 42 people nodded their head when they saw that.... |
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"Thanks for this!" says: | bny806 (05-20-2013) |
05-20-2013, 09:29 PM | #4 | ||
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So i'm not alone in that? I do feel like EVERY muscle is affected.. I guess I used to kind of hold in my stomach so it would be a little more flat after having a baby. ..but now I don't have the strength to do that.. I feel like a lump O jello sometimes!! I remember when I crashed I couldn't do a thing, including go to the bathroom, get up off the toilet etc.. it was so awful! I just don't want to reach that point again! The abdominal/respiratory weakness makes me so uneasy!
Thanks yall |
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05-20-2013, 09:42 PM | #5 | |||
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For me, no mestinon = no bladder control.
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Celeste |
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05-21-2013, 06:56 AM | #6 | ||
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Well....something to look forward to....urg.
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05-21-2013, 08:20 AM | #7 | |||
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Maybe it won't do it to you. Everybody is different.
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Celeste |
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"Thanks for this!" says: | Fortunatos (05-21-2013), Mastas (05-21-2013) |
06-05-2013, 02:15 PM | #8 | ||
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Do yall ever feel like your ab's are going to be torn away from your ribs when your torso is weak? I have hormones exacerbating things in addition to my IVIG starting to wear off - ugh.. I pressed down on something with my hands (which I never knew used your abs before).. but my abs were so weak it felt like they were going to rip apart from my ribs! then I was sore for a day - like a pulled a muscle from such a simple task.. laughing can even bring on this abdominal wall strain!
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06-05-2013, 06:05 PM | #9 | |||
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I think that may be the intercostal muscle pain that I occasional get. They are such small muscles but they hurt really bad. It kind of feels like the rib is pulling away. One time there were so painful, I could not hook my bra for 2 weeks. I had to ask my teenage daughter! How embarassing!
Kathie |
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06-06-2013, 01:26 AM | #10 | |||
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When I was recovering from my hysterectomy, I wore a surgical binder around my abdomen that was adjustable by velcro. Do you think something like this would give you additional abdominal support and relieve the abdominal wall pain? I think I got mine at Walmart, it was not very expensive.
kathie |
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