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zayna · 07-01-2010, 11:46 PM

I have had MG for a year and a half now. I have been on every med and have done every treatment inclouding thymectomy....so maybe I can help....I am not sure what you mean about your legs feeling full of lead? What I can tell you is that I have weakness in my legs do to MG and it feels like they are heavy and hard to lift per step...at my worse my legs turn to what I refer to as "noodles" and I walk with a wobble as if I have no control of my legs although I do. If I continue with activity I feel a burning sensation I compare it to the pain you feel when doing a squat and cant take it any longer before you stand...only the pain doesnt go away for me unless I rest for a significant amount of time. For the most part, I do not feel these things unless I have pushed my limits...so I have to know what my limits are. Prior to treatment I felt these things all the time regardless of medicine...so you may not be on the right dose or med for you....remember, everyone is different and the doctors have to make a treatmentment plan that is best for you. Be patient, my "plan" took a while to find, but I am doing good now and count my blessings...please ask me more if I can help =)

Love
Zayna

Quote:

Originally Posted by Kathie Glenn

I have one simple question that I can't get my doctors to answer one way or the other. Quick back ground info: (1) was on 60 mg Pred for 5 months, then started going down. Got to 17.5 and double vision came back. Went back to 20mg. daily (2) added CellCept 2000 mg/day in January 2010 (3) added Mestinon in April and double vision disappeared completely (4) a little over a month ago my legs (from hip to knee) started feeling like they were full of lead. They were weak and heavy to lift. I asked the drs. if this was due to MG or the 40 lbs I had gained on Pred, etc. GOT NO DIRECT ANSWER. SO, I am asking all of you - HAVE YOU EXPERIENCED THIS "LEAD LEG" FEELING? If so, what has your dr. said or what have you done about it? Three weeks ago I was reduced to 10 mg. of Pred and today I began reducing the CellCept in half since my vision is better. All by drs orders, of course. Last night my upper legs were so heavy I didn't think I was going to be able to get out of the chair and my left knee throbbed all night. I just wish they would tell me what is causingit. When I mentioned it was listed as a side effect of CellCept the dr. just shook his head back and forth as if to say "no". If it is because I have gained weight - just tell me. If it is something that just goes along with MG - just tell me (although they have told me I have "only ocular MG). I just want an answer. Hope someone out there can give me some info to ease my mind. My emotions are already all over everywhere from coming down on the Pred dosage, I can't add anymore stress! Thank you.: