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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#11 | ||
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Junior Member
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![]() I think it's important that we recognize that we are no saints. As women of course we want to look attractive (and I guess guys want that too). When we were healthy, I bet we didn't pay more attention to our looks than others, but with moonface and facial hairs on top of not being able to walk etc. etc. - it's just not fun. I've often tried to tell myself that I'm lucky for being more healthy than others, but that doesn't mean I feel good. Should we make some kind of graded list so only people on top of the list are allowed to complaint? "You only have 2 broken legs and a broken hip - it will mend so you are not allowed to complain or feel sorry for yourself". ![]() It's hard with inlaws, I think. I got ill only ½ year after I met my husband, and since then it has only gotten worse. My mother in law once admitted that ofc. she would rather have had that her son had fallen in love with a healthy woman, and now - as a mother of a son - I must admit I feel the same. I would be sad to see him love someone ill, because it does put a stress on the relationship, so it's not her being mean, she is just a very honest person. She also said that she likes me, because she knows I love her son like no one else, and I support him in my own way as no one else can. And that last part I try to remember when I feel embarrassed or sad about being ill. So maybe your face is big now - inside you are still that gorgeous woman your husband fell in love with! And no one else can love and help him through love like you can! And btw the facial hair can be removed with laser - I've had that done and it works so good. And never was I more happy than when I could stop looking for those big, black spiderleg-hair in my face in the morning, so I could get rid of them before anyone saw me. ![]() |
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#12 | |||
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Senior Member
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Hey there! How are you today? Yesterday was a tough day for me - barely made it off the sofa - but today is much better!
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#13 | |||
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Senior Member
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Thank you for that! I laughed when I read the first line - you're soooooo right! I often catch myself alternating between feeling guilty for wishing someone else had this, and then getting angry (why me,God?), and then realizing it could be much worse, but the truth of the matter is that it is what it is, and there is nothing I can do but try to keep my spirits up and keep pushing for recovery. I never thought I was vain, but now worry about my looks all the time and that is just silly b/c with the help of steroids I can swallow, walk, and do most of the things that I used to do. I think it's more of a control issue for me, simply b/c I no longer have control over my body. My hubby has been the best - simply the best. He tells me every day how beautiful I am
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#14 | |||
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Senior Member
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Hey Kathy! Iknow what you mean about the side effects versus just being able to "live normally" again - it's a catch 22. Hopefully you won't go through the crazy mood swings ( I was always high strung to begin with, so they DID NOT HELP IN THAT AREA). MY poor son and hubby never know when I'm going to be my normal self or a crazy lady; trouble is, neither do I
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#15 | |||
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Senior Member
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If the ABS thingy is my automimmune antibodies, then they were WAAAAY high - my neuro said a "normal" reading is .04 - mine was over 600 when I was admitted to the ICU, howver they did go down right after my thymectomy..........
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#16 | |||
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Junior Member
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Sorry about the abbreviation Abs---I did mean antibodies, but as my spelling sucks, I like to shorten things up
I can't believe that you had to get that bad before anyone figured out anything...I guess it is becoming a common occurance. Last nite an today I'm not doing so good--I have another bout of asthmatic bronchitis (b/c I'm refluxing from my g-tube and aspirating the mushy stuff I'm trying to eat. I'm making arrangements to get the J-tube replaced which should eliminate the reflux. I also got prednisone for the asthma and leviquin for the infection (which of course I don't have the muscle strength to cough up) Hopefully I'm preventing a trip to the ED. This all sucks, but at least things should get better and my Hopkins appoint is only 8 days away. Quote:
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#17 | |||
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Senior Member
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Yep, my antibodies were WAAAAAAY up when I was admittted - I was so scared! I had lost approx. 30 lbs. in about a month cuz' I couldn't swallow or anything for that matter...what really scared me was when I stopped breathing -that was the final straw. I called my dr. and was admitted IMMEDIATELY to the ICU where I spent the next 9 days being hooked up to every tube known to man
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#18 | |||
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Junior Member
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I live in outside of Richmond and there is only 1 neurology group in town. I have IVIG 0.6mg/kg every 3 weeks (last dose last Mon, so it should be in full effect--before I started the IVIG I couldn't walk and was on O2---I had a 5 day course and have been having it monthly (or less now) for the past 4 years...it has been the only thing that actually worked---but it seem that it is not enough anymore
I started a steroid taper (60mg x3d, 40 x3d...) yesterday and it helped my breathing...I was wheezing alot. Now I can at least walk to the kitchen without significant SOB. My swallowing is worse today, but I scheduled to have a J-tube (into y small intestine so I won;' reflux) placed through my G-tube tomorrow, so after that I would be eating anymore (right now I'm using the G-tube, but do to reflux I can't put enough in so I supplement with mushy stuff like soft boiled eggs. Befroe the G-tube I lost 30 lbs also (in 4 weeks), although I don't need to see any of that weight back. I have no idea what the neuro's down here are thinking...I went to me primary care yesterday for the breathing stuff and she was appalled at their lack of initiative, but there is not much she can do..except wait for my appoint next week. Hopkins better come up with something or I may just go ballistic. Are you feeling well today? |
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#19 | |||
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Senior Member
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Good LOrd! Only one neuro group? I always wanted to live in a small town, but it is much less appealing now......
![]() Today has been rough. I've got 2 abcesses, thrush and a crazy sinus infection, so I'm a little down today. I just get so scared at the thought of having another crisis that I have to take my xanax daily - and the steroids definately don't help with anxiety ![]() Quote:
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#20 | |||
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Junior Member
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An infection and thrush...that really sucks--when I had thrush it hurt to swallow. What are the abcesses from--the surgery?
Yes I do have asthma, but my respirator muscles are weak also NIF and PIF of ~-20 and +30. Because I'm aspiring and refluxing that triggers the asthma and then I don't have the muscles to cough stuff out...it is just a mess. Today I had a slightly better attidue...probably due to the predisone...it tends to make my hyper...just before it makes me totally neurotic and pissy. I used to have good veins...now I have 1 left Steriods (and abuse) tend to destroy veins I take all the prayers I can get--and I've got you on my list also. I have 3 kids (8-14) and an awesome hubby (and 2 rowdy golden retrievers)...my older 2 are away at camp for 2 weeks so things are quiet. My neuro won't give me a prognosis..or any treatment alternatives...he just tells me to rest . My pulmonologist tjust tells me to come back the the ED if my breathing gets bad again (last adminision my NIF and PIF were -12 and 12...which is getting too close to being intubated. I'm hangin in there. I'm sorry you've had a bad day. |
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