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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-13-2008, 06:55 AM | #11 | |||
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BRAVO! Never give up! Never surrender! We will ALL have good days and bad days, but it will pass! MY hubby and son need me to be around, so I'll do whatever I have to on order to be here for them! If I have to go in and have a PICC line put in me monthly, so be it! I'll do whatever I have to to take care of them! Well put, Ctulin!
Erin Quote:
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Erin . |
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09-14-2008, 05:42 PM | #12 | ||
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Junior Member
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All,
The 10 mg Prednisone per day has brought my eye lid back to normal and the double vision is getting better. I still take Mestinon 60 mg three times a day along with 500 mg of Cellcept twice a day. I have been on Prednisone for two weeks and the Mestinon for two months (which did not help, alone). Go back to my Doc this Wednesday. So far I have no side effects from any of the medicine. I did not know young people like Erin and others got sick until they reached my age. I have never been sick after the “child hood diseases that we all received”. Never missed a day’s work during my career and I have not had a headache, yet. Hope all of you get well soon. Motorcycles: Retired from riding , still give all the “motorcycle wave” as the past by. My son wants me to get another one as I am in a great riding area . If you ever get to Birmingham, Alabama go to Barber’s Museum. They have over 1000 old motors that run, on display. Military: Retired from the Army Reserve after 36 years. Joined the Navy Reserve in high school then switched to the army after college to get a commission. Went to Somalia two years before the big battle. Gardening: Master Gardner and I like plants. If you have not been to the school in your state, you should. Only problem it is hard to throw away the trimmings. You plant them instead and give away all the good looking flowers after about a year. Hope all are getting better with medical problems. I think I am over my mad spell and looking forward to being well. See you later, Bull Dog Fairhope, AL |
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09-15-2008, 12:34 PM | #13 | ||
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Junior Member
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I'm a Gulf Vet. I retired from the Reserves last year after 41 years to the day from the day I enlisted to retirement. 4-5 months before retirement I was diagnosed with MG. It's gotten steadily worse and I am now on Mestinon (which was issued to us to carry in our gas masks in the Gulf, called pyridostigmine bromide) as well as Cellcept. It looks like it has caused central sleep apnea, causing me to now wear a bi-pap mask to sleep. I called Gulf Vets Health Hotline and asked them how many cases of MG are being reported among Gulf Vets. They told me 1 in 100. That is alarming when compared to frequency rates in normal population which I believe runs about 1 in 8000 to 10000 people. MG is a presumptive condition with the VA which means if you have the DD 214, they presume the condition is service-connected.
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09-15-2008, 04:00 PM | #14 | ||
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Junior Member
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John,
I think for sure it is related; all the shots you take to go out of the country make many people sick. Many people have Malaria on these trips. I remember one trip taking about ten shots and made sure I got the Malaria pills when I got home. Looks like you have a good case to go on VA Benefits with the DD 214 backing you. TFL is great for us also, thank goodness, it has saved me many dollars. I am new on the MG and probably will come down with something. They have to weaken the immune system so other medicine will work. I wanted to stay in the reserve longer but the limits on time in grade got me, but it sure is nice to have the retirement check every month. Bull Dog Fairhope, AL Quote:
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09-15-2008, 04:27 PM | #15 | |||
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Senior Member
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That is unbelievable! You actually carried Mestinon with you when you were over there? 1 in 100? Something is NOT RIGHT! I am going to asl my neuro about that.........That is truly scary! I don't know what is going on, but the stats are truly scary..........Hang in there and let us all know how you are doing Erin
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09-19-2008, 01:09 PM | #16 | |||
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When it comes to double vision,Most MGer's dont' get relief from Mestinon .
Prednisone will help the fastest, with in a few weeks. Other immuno suppressants such as Imuran, Cell-cept, CycloSporine..etc. will take a few months to see the difference, and it's also very common for it to take up to a good year to see full effects of those drugs. For the most part, the meds for this disease, is not something that's a quick fix. Unfortuanately it can take a few years to really work out what cocktail of meds work best for your body. This is why it's known as the snowflake disease, cause we're all so different and react so differently to treatments. Too many things play into it. Best of wishes. In the mean time, there is the prism and tape to help while you're getting situated. Love Lizzie |
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09-19-2008, 06:15 PM | #17 | ||
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Junior Member
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I have been on Prednisone now for two weeks and it sure helps. Doc said to be careful that the MG works in mysterious ways. I am beginning to do things I did years ago but thought old age was on the way. Like walking down the middle of steps instead of by the hand rail, squatting down, playing tennis with out the fear of being off balance. I think the disease is so slow that I have had it for maybe years and accepted the problem and the family doctor did not seem concerned until I had double vision.
Hope all goes well for you. Bull Dog Fairhope, AL Quote:
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09-20-2008, 03:54 PM | #18 | |||
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Just a tiny reminder that once your body has been on Prednisone for 7 days, your body is addicted to it, and one should never just stop it. It should always be done slowy under the care of a doctor.
Our Adrenals shut down, and have to be reawoken slowly. Prednisone isn't called the good guy, the bad guy for nothing.. I'm glad you're feeling better. I remember when I first felt Prednisone kick in, I loved it soooo much. 4 and 1/2 years later, I feel a little different about it. Best of Wishes Love Lizzie |
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09-21-2008, 10:45 AM | #19 | ||
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Junior Member
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Thanks for the good information. I keep list of my medicine in my billfold in case of an emergency etc. I read all the possible effects Prednisone may have on people which seem to include everything bad. I take 10 mg a day now, return to the doctor in 6 weeks, and hope to cut to every other day on Prednisone. We will see. 4 ˝ years??? Are we on this type medicine forever? I have read a lot on this WEB Site and it seems MG is bad for all who have it. Have noticed that a lot of young ladies, like yourself, have this.
Hope your health gets better and a normal life follows. Good luck and thanks again for any information. Bull Dog Fairhope, AL Quote:
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09-21-2008, 05:37 PM | #20 | ||
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Junior Member
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Lizzie,
Forgot to ask why you do not like the Prednisone today and you loved it 4 ˝ years ago. I really enjoyed visiting Upper State New York while in the Army Reserve. We covered New York Units from Fort Drum for a few years. Made visits in the summer… Bull Dog |
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