Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 07-31-2009, 01:36 PM #1
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hi everyone. noob to this forum and to mg. i was diagnosed around 3 mos. ago. confirmed by antibody blood tests. also nerve condutivity study (ouch!) had misdiagnosed ptosis off and on for 2 years previously, finally new symptoms presented during a particularly nasty bought of the flu. always good to have answers, even if they aren't the ones we want.
i'm curious about new treatments and in particular, an alternative to steroids developed in israel. see my thread on same. i am not interested in alternative medicine, prayer or voodoo.
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Old 07-31-2009, 08:42 PM #2
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Hi and welcome to the forum.
Always good to see a newby around, look forward to seeing you around the board more

Kate
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Old 07-31-2009, 11:20 PM #3
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thx. love your sig BTW.
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Old 08-01-2009, 10:19 AM #4
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Hello and welcome, no voodoo here that I am aware of..LOL. I have had MG for over 18 years but as of today I take no medication for it {to many allergies to meds} so I just control my MG with rest and planning.
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Old 08-01-2009, 01:27 PM #5
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i wish that were the case for me. it had reached the point where i could barely eat normally. mestinon has been a lifesaver for me.
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Old 08-01-2009, 11:48 PM #6
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thanks. I love reading and dogs so thought it was appropriate!!
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Old 08-02-2009, 01:32 AM #7
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today was difficult. tried to work on my truck. seems to be one of my most difficult tasks. the positions and such tire me. truly sux because i do lots of mechanical work. did it professionally for 14 years. the really odd thing is that my regular work as a contractor seems much more physically demanding yet tires me much less. i have difficulty lifting over my head but am able to climb ladders and handle heavy tools with little difficulty. when i spend 15-20 min. leaning over a motor i feel like i need to lay down. my neck gets especially sore looking down. like my head weighs a ton. wierd???
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Old 08-02-2009, 03:38 AM #8
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Hi motorhead,
Yes indeed, MG is a very peculiar illness. When mine started, almost all "volontary" muscles were affected except the leg and thoracic ones. After about 6 months of treatment (Mestinon, high dose Pred and Cellcept), I recovered arm strength, neck strength was back after only 2 or 3 months, and strangely, my legs got weak and it stays like that -max one hour walk on flat ground, no mention for stair climbing!- for about one year although I could swim for half an hour without any problem.
Presently (about 2 years from the start) I got my leg about normal to the point that I'm planning some hiking mid August…
Cataract: I'm in the same condition as you (one eye done before MG and the other, after) but I have now glaucoma treated with eye-drops mornings and evenings, so watch out for that!
Maurice.
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Old 08-02-2009, 09:51 AM #9
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A quick welcome to the group, we all start good & wear out fast !
Mary
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Old 08-02-2009, 07:06 PM #10
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so it seems. the prob for me is the inability to predict how and at what rate. i think part of my difficulty right now is i just hit the peak dosage on steroids. 60mg first thing in the morning. also on heavy mestinon, 90 mg/4 hrs., lots of stuff to adjust to. as i said in my earlier post though, anything beats being fully symptomatic. i'll make sure i hit my opthamologist regularly. he checks me for glauc. every time. i can truly enjoy my new eyes now that they're fully open.
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