Experiences with remission
 

Hi all,
I have noticed some posts lately indicating some of you have been in remission at some point in your struggle with this condition. I am very interested in hearing your stories.

I was 25 when diagnosed, tho I think I was experiencing very mild symptoms for a few years prior. I have been seriously affected for about 20 months. I've had a thymectomy, Prednison, Imuran, monthly IVIG infusions. I also take a 180mg timespan mestinon 2x daily, as well as a half of a 60mg quick release mestinon about every hour. I started to have some relief last summer after my first infusion, but since that wore off each infusion has seemed to help less and less. Over the last 8 months since that first infusion, I have had to increase my quick release to a full 8 pills a day, plus the timespan and other meds. My condition just seems to be getting worse and worse. I had hoped after my thym, and response to the IVIG, I was headed in the direction of remission, at least a medicated one.

I would love to hear how long each of yours lasted, and what symptoms you had prior, as well as during (if any) your remission. How long did it last? What therapy were you on when it started? How long into the illness did it come on?
Thank you very much, I hope this finds you strong and healthy.
Jessica

Experience with Remission
 

Hi Jessica,
I am not "officially" in remission although I strongly suspect I am. I was Dxed in July 09 after a droopy eyelid surfaced. After my DX I realized I had been having symptoms for about 6 months prior but didnt know what they were at the time. I was started on Mestinon which did nothing for my symptoms. That was increased several times and Cellcept was added. The Cellcept made me terribly sick and was stopped after about 2 weeks. That is when I started Pred. I was on high doses for about 8 months and then slowly weaned off. I am totally off of it now and am only taking Mestinon. It took months to get it totally out of my system and lose the weight I gained along with the feelings of anxiousness and forgetfullness. I had been taking it every 3 hours around the clock and it always wore off around the 2 1/2 hour mark so I never needed to watch the clock. Around the middle of Jan. my son was in a bad accident and was in ICU for several days. I was running on overdrive and knew I was playing with fire and would most likely have a major flare up. It wasnt until a couple of weeks later that I realized I had no flare up and actually my symptoms were less than ever before. It has continued to improve and alot of days I need very little Mestinon. Yesterday I took one about 11:00am and didnt need it again. I also have so much more energy and feel like I have come out of the fog I lived in for a year and a half. I am scared to get my hopes up but am very hopeful that in time I may be in full remission. I dont know what brought this on but I am thankful everyday that I feel good. I have worked so hard to eliminate as much stress as possible from my life and have quit working so I can rest and take care of myself. I sleep when Im tired and take a multi vitamin and B complex every day. I still have days when Im really sleep deprived where I may need more Mestinon but that is becoming more and more rare. Try not to become frustrated and focus your energy on healing your body as much as you possibly can. I too got much worse before I started getting better. I dont know if you believe in the power of prayer but I truly believe God has healed me. When my son was in the hospital I sat by his bedside for days holing his hand and praying God would let him live and would heal his mind and body. He fell off a porch and hit his head on a piece of lawn equipment. It shattered part of his skull and a bone shard severed an artery in the brain lining and caused a blood clot. He had to have brain surgery to remove the clot and was in a medically induced coma for 3 days. He was paralyzed on his right side and was unable to speak any words that made sense. It was truly touch and go and the surgeons told us that even though the clot was removed he still might not survive. That was Jan 18 and there is no sign that he was ever injured outside of the scar on his head. He has regained full use of his right side, his speech is perfect and he is just like he was before. I know God gave us a miracle and I wonder if when he healed him he healed me too. My faith wavered after I was Dxed because I felt like my life had been stolen from me. My sons accident has restored my faith and taught me that it can always be worse! I know battling this disease is so frustrating and discouraging. Just remember that any day you can go into remission! Dont give up! You are young and healthy so I would think that would be in your favor. I pray that someday there will be a cure for MG and no one else will have to suffer like we have. Hang in there Jessica and know that I am sending prayers and positive thoughts your way for a full recovery!:hug:
Kendra