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My meds not working!!!
I was diagnosed with MG on the 4th of July. I started having a hard time (sometimes impossible) keeping my eyes open and when I could, everything was blurry or double vision. I am currently taking 75 mg of mestinon every 4hours . I'm still struggling with my eyes about 5 hours of the day. I have to get up at night to take it or I can't see in the morning. I haven't been able to work and I feel like my five year old son is being neglected:( . I called the doc and he said he'd like to up my dose of mestinon but can't because I'm already having severe stomach cramps. He said we may have to change meds but when I've looked up some of the others the side effects seem horrible!!! I don't know what to do! Will my life ever be normal again??? Does anyone have any suggestions on the med. or take something besides mestinon that hasn't turned them into a hairy, moody, monster???
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Hi Alissa,
As far as Mestinon is concerned, you should ask for Timespan, which is a special form of Mestinon with a long action (12 hours or so) and which should allow you to spend a whole night without problem. For occular MG, if Mestinon doesn't work, the other medication is steroids (prednisone) which could be effective within weeks and the cure could be as short as a few month. I recently read an paper on the subject, I' ll go get the reference and will post it. Be patient, keep faith and hope! Maurice. |
This is the reference I was talking about.
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum Maurice. |
Mestinon doesn't usually do a whole lot for ocular symptoms. Sadly, you will likely need more treatment than just mestinon. The side effects do sound horrible on them ALL, but rarely does anyone have a real problem.
I know how you feel where your son in concerned. My dd was about 18 mos old when I first got sick. It was scary, and I don't really know how we made it through those first few years. I recommend you have a face to face meeting with your doctor to discuss treatment options. Good luck, Missy |
Hello! Are you feeling better now?
Hello Alissa! I am also new to this whole Mg thing. I was diagnosed on March 6th and underwent a thymectomy April 22nd. Since my thymectomy my recovery has been slow, with several setbacks, but am really looking forward to remission (who isn't?:D) Have your docs put you on any new meds? How are you feeling? I know that when I was finally diagnosed, I was really, really sick (stage 4) and had to stay in the ICU for a long while, but it made me feel GREAT! It sounds like you need more than just mestinon, cuz' when I was JUST on mestinon I was also unable to keep my eyes open........I am now on Cellcelpt, Prednisone, Mestinon and a whole slew of meds, but they make my life a whole lot better:D Have your docs talked about you having a thymectomy? There seems to be a lot of controversy on this subject, but I am glad I did regardless of the consequences.........I have a very aggressive neuro who highly recommended I have one in order to regain my life so I went for it! It was painful, really painful but I am looking forward to regaining my life......I know you are scared, but this disease can be controlled, so long as you have the right doc! Hang in there and let me know how you are when you get a chance! Erin:D
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