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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Member
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I've checked in several times in the past 2 days and each time it shows that there have been no new posts since 6/21 in the morning.
I can't believe no one has posted since then. Maybe a glitch in the system or my computer ![]() So I started this new thread to see if this jumpstarts things. |
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#2 | ||
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Member
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I wondered too...but I guess there isn't anything wrong technically. Folks just got busy - - hopefully cause everyone's feeling better!
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#3 | |||
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Co-Administrator
Community Support Team
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If any are from Oregon, Washington - we finally got some nice weather so that might be a part of it.
The forums here at Neurotalk are all fine - no problems at all.
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#4 | |||
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Member
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Hope you're right. I know I've been feeling great -- 6 months since my thymectomy and radiation. Off Prednisone for 9 weeks now and neuro says I can try reducing/eliminating Mestinon. Currently take 30mg three times a day. Recently I've not been home when my 2nd dose was due and skipped it. No adverse effects. Heat isn't bothering me either like it was last summer. Am approaching the 1 year anniversary when my symptoms (ocular) first appeared. Lot has happened in that year.
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#5 | ||
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Junior Member
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wow thats pretty amazing...only one year with symptoms?
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#6 | |||
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Member
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I was diagnosed with MG within 3 weeks of my first symptoms -- double vision & ptosis. Blood test was positive for acetycholine receptor antibody. Put on Prednisone & Mestinon immediately. Had thymectomy 5 months later followed by radiation since thymoma was Stage IIa. I really believe that my early diagnosis helped me (at least that's what I choose to believe).
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#7 | |||
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Member
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I haven't posted much recently...I am going through another bad time, but hopeful about it.
I was getting major muscle cramps this past week and twitches in my shoulders and back which are now going away since I reduced my Mestinon. I had severe enough pain I almost went to the ER, but decided to see if the pains went away with less Mestinon, and they did. This is the third time this has happened since I got MG and it is difficult to determine if I need more or less Mestinon or if something else is going on. So I am hesitant to celebrate about my MG symptoms decreasing, but it seems that they have. I am taking 1/4 pills (15 mg) once a day now, which isn't much but if I take more I am getting muscle cramps, and it is enough to keep the MG symptoms minimal. Need to talk with my neuro about this. And with the way MG has its good and bad moments, maybe I am just having a few good days...and hoping that it stays this way for a while. Still have a few sore muscles, but that is fading. I am finding that these hot days (109 degrees F today) recently have been making my MG feel better. I don't understand how, but the heat feels good as long as I drink lots of water. I hope everyone is doing well.
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#8 | |||
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Wisest Elder Ever
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We get slow downs on PN all the time. Mostly weekends, or holiday times.
I agree with Jo too, that nice weather and summer tend to be slower because people are outside more. I know I am! ![]()
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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