http://www.mdjunction.com/forums/myasthenia-gravis-discussions/feed http://www.mdjunction.com/forums/myasthenia-gravis-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Sat, 18 May 2013 22:56:35 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10690274-unbelievable-trip-to-er#10691500 It amazes me that you are treated so poorly at the hospital. Have you discussed with the neuro that you do like how you are treated by the other one and maybe see what he suggests you do in such a situation?? Loved the story about the psychiatrist diagnosing MG..... Sat, 18 May 2013 20:09:02 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10677562-serious-issue#10688106 Breathing issues can be part of it. Since it is new I would call your doctor and let them know. Maybe he could see you sooner.... Fri, 17 May 2013 05:53:16 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10684214-new-here-please-give-me-your-thoughts-on-this#10687706 Most of you seem to either have symptoms come on quickly either ocular or generalized or maybe just start as ocular and then not progress much. (at least from what I have read) My question is, has anyone started with ocular symptoms for awhile and then just kept progressing to generalized? Looking back I thing I had issues with my vision for awhile which were being attributed to Migraines until the drooping lid got more constant. The fatigue started and just kept getting a worse, little by... Thu, 16 May 2013 21:21:17 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/156645-cooling-vests-work#10685994 That is so interesting. Cooling vests etc. never occurred to me. Hot, humid weather does makes me weaker. I would imagine that even those scarves with the cooling gel/ice that I've seen advertised would be a help. Amazing. Thanks for your comment Baylady... Thu, 16 May 2013 07:52:45 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/medicine-treatments/3932664-ivig-questions/limitstart/20#10684136 I'm sorry that it added to your symptoms. Maybe another round would be helpful for you, if you had minimal side effects the first time around. My doctor wouldn't prescribe another round. I ended up doing PT and getting AFOs for my legs, much less painful and it worked. If only they could've came up with that before torturing me lol... Wed, 15 May 2013 12:49:27 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10666414-warning-signs-of-oncoming-crisis#10683451 Go now if you can't breath better to be safe... Wed, 15 May 2013 07:42:48 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10553677-just-found-out-and-it-sucks/limitstart/10#10677568 My thymectomy in 2002 alleviated the slurring and I enjoyed a ten year remission. Good luck! Greg... Sun, 12 May 2013 12:05:17 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/introductions-personal-stories/10677479-hello-just-diagnosed#10677479 Hello, I was just diagnosed and still on the roller coaster of trying to figure out what I do from here. I have to find a specialist as I was diagnosed by a neuro opthomalogist, but he is going to treat me until he can find me a good specialist. Part of me is finding relief in finally having a name to put to the monster that I have been fighting for so many years. Now that I am reading on what can happen I am soooo thankful that I never had a true MG crisis. It sounds so scary. I am 35 and... Sun, 12 May 2013 10:42:20 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10675100-dealing#10675314 I, too am applying for SS disability. Even though MG is on their list of impairments , and I was diagnosed in 2002 by an experienced neurologist, continuuing to work for ten years after a thymectomy, plamsphersis and radiation, they denied me since, without even examining me, they think I'm not disabled. If they bothered to look, they'd see I have good days but mostly days where I'm not able to function like others! What an insidious, plain old crappy disorder. By the way, I am appealing. ... Sat, 11 May 2013 08:20:34 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10673413-what-is-a-myasthenic-crisis-and-what-should-i-do#10673413 Hello Everyone...:) The possibility of experiencing a serious, MG episode is a normal and valid concern, particularly for the newly diagnosed--the less-seasoned myasthenic. Fewer than 5% of an already small population diagnosed with this condition, will have what is referred to, as an MG crisis. For most, not all, but for most of this population, you will know if you are in trouble. That said, everyone needs to learn the best and worst case scenarios. In this way, you are knowledgea... Fri, 10 May 2013 10:59:01 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10669814-drooping-eyelid-are-you-going-through-the-same-thing#10671195 Kristen, Thanks for writing. Although I'm a 51 year-old dad, I too had MG mildly in the recent past and feel sheepish too. Many of our MG brethren (I feel like it is a cult almost) are in bad straits and my heart goes out to them. I was diagnosed in 2002 but I think I had it for years before I was 40. Droopy eyelids are not something I have but I had a thymectomy in 2002 to remove a growth on my thymus. I've been OK since last fall when I chose to have steroid injections epidurally in ... Thu, 09 May 2013 11:25:07 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/introductions-personal-stories/10669839-droopy-eyelid-are-you-going-through-the-same-thing#10669839 Hello all, I'm a new member to this support group and I was diagnosed with MG about 6-7 years ago. Looking back, I did haven't had too problems with MG, therefore a big part of me feel like I shouldn't be complaining when others are suffering from worse conditions from MG than I am (problem breathing etc.) A little about myself, I am currently 23 years old and a month and a half away from graduating college. Like I've said before I haven't had much issues with my symptoms except for the d... Wed, 08 May 2013 19:12:28 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10666421-emergency-or-not#10668803 The neuro at the hosp. told me the reason you can't breath is that your respitory muscles are so week they can't work properly. You are getting oxygen it just isn't doing what it is supposed to do. It is scary. I know, I just worry when my next crisis will come. Cyndi... Wed, 08 May 2013 11:19:08 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10557296-mg-things-to-be-thankful-for/limitstart/10#10667179 You have a terrific outlook and what you say is so true. I know I appreciate things now that when I was healthy I probably would not even have noticed. I try to not be me with MG, just be me with a different way to live life to the fullest.... Tue, 07 May 2013 17:35:45 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10591702-negative-tests/limitstart/10#10662984 frogpond, how very true. One of the neuros I saw was an MDA doctor that specializes in MG. He spent a total of 7 minutes (I noticed) in the room with me, after I had waited over 2 hours. He was so arrogant. I really get a lot from the people here. It helps to know its not just me.... Sun, 05 May 2013 16:51:29 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10659606-ivig-response-time#10661631 You are getting alot more of the IVIG so I hope it does work for you. The unpredictability of the MG and the response to treatment is really difficult to deal with isnt it? Good luck, I hope to hear you are doing alot better. Carol... Sat, 04 May 2013 20:49:34 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10660656-spicy-food#10660674 I have not had any issues with spicy food...love my wings... Sat, 04 May 2013 12:58:50 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/introductions-personal-stories/10535417-im-new-been-on-remission-for-twelve-years#10655982 What is the post op recovery time for thymus removal... Thu, 02 May 2013 10:06:02 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10651283-latest-mg-info#10651446 Thanks!! My MG needs to be actively managed so I apprciate the info reminders. Greg... Tue, 30 Apr 2013 05:56:30 -0700 http://www.mdjunction.com/forums/myasthenia-gravis-discussions/general-support/10642341-question-with-the-weather#10642642 Yes, weather has much to do withmy MG. First, lousy weather translates into a lousy mood! Second, my immune system fatigues sooner, therefore tiring me, with lousy eather. Sunny days are much better! Greg... Thu, 25 Apr 2013 16:46:01 -0700