mik
Forum Replies Created
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Your neurologist should be doing Cbc and metabolic panel every few months. By checking your lymphocytes levels plus others they should be able to tell how well the cellcept is working. My body works well at 1000 per day. The plan was to go to 2000 but the blood labs said it was not needed. Also after 9 to 12 months your cellcept is doing all its going to do.
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I’m not sure what stage I’m in. My diagnosis came from having a GMG crisis in 2023 resulting in a 3 month hospital tour. At this point my Adl is 2. Nine months ago I was only using a cane but my mobility has worsened so I’m back to a walker and cane. I’m down to 5mg prednisone and 1000 cellcept. Was at 40 prednisone a year ago. Debate with my neurologist is my lack of or worsening mobility a result of prednisone taper or the 3 month hospital stay in 2023. I’m wanting to push for a different treatment plan. Any opinions?
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I believe it has strengthen my lungs and anything that helps be breathe more helps with my energy. The device has different settings for inhaling and exhaling. I started at the low setting and increased each week.
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I use a device called The Breather you can Google it. Seems to help my breathing. I use it every day.
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I’ve read two.Some spoons are worth spending by Dr Liz Plowman and one by Russell Hanson titled Myasthenia Gravis a personal success story. Both easy good reading.
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I’m at 1000 cellcept and down to 5 prednisone. Still have some walking, balance mobility problems. Was taking mestinon now off. In my opinion if your taking Mestinon then your condition is not under control very well. Thinking of talking with my neurologist next appointment to see if one of the newer infusion treatments would help my mobility issues.
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After my crisis and diagnoses in 2023 I’ve had to learn to walk again but the last few months my walking has worsen instead of better. I went from a walker to a cane to no cane for a month now a cane again. So walking and the fatigue is what’s bothersome.
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Attended two virtually and enjoyed them both.
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So I’m taking 10mg prednisone and 1000 cellcept. Going to 5mg on April fools day. Lol only symptoms now are mobility. Weak legs and bad gait. Also taking Androgel for the same condition as you. Are you completely back to normal?
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Gaylee your journey sounds similar to mine. I spent 3 months like that. Plasma exchange did it for me. Been out 14 months still having trouble walking.
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This is for hemby. Maybe find a teaching medical college to get your husband treated. A trip to the ER might speed things along.
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I get brain fog quite often and the more I have to read the more fatigue I get.
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So my question is for all these people taking a bunch of mestinon each day for years. Do you consider your MG under control?
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Mine is the ability to walk normal. I stumble and limp when I walk and my gait is uneven. Still debating with neurologist if it is MG or muscle loss from the 3 month hospital end of 2023. Doing a new round of pt now.
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The old saying “move it or lose it “comes to mind. Sitting in a chair move your legs and feet. Try some stetches. do some balance exercises. We all need to try to move with this MG.
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Diagnosed with Gmg after a MG crisis in the fall of 2023. Almost 3 months in the hospital. 71 years old on prednisone and cellcept. Only problem is my balance, gait and mobility along with the muscle fatigue or weakness. The debate with my neurologist is if it’s mg or loss of muscle from the hospital stay. Balance exercises seem to help and we’re starting a new round of PT. I’m walking using a cane but it’s not a pretty picture. Lol
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Just a heads up Xanax and Ambien isn’t recommended with our Mg.
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I don’t understand why antibody testing isn’t done say every 3 months. Wouldn’t your antibody level correspond with our disease progress.
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After being diagnosed why don’t Neurologists do blood tests regularly to monitor the amount of Achr + antibodies if on immune suppressants like prednisone and cellcept?
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That’s great progress I hope it will continue.
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I was 69 last year. Had a hip revision in August last year and at the end of September was in the er with a myasthenia crisis. Had never heard of MG. Took them 4 days to diagnose. Couldn’t walk talk swallow or breathe. Coma for a week an intubated 3 month hospital stay. What a journey it has been. Probably 90% recovered. On cellcept and prednisone mestinon occasionally. Turned 70 three days after getting released.
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So what’s the game plan after the prednisone? Seems like that is an extreme weaning of the prednisone.
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I’ve been off the mestinon 3 months. I’m on 15 prednisone and 1000 cellcept. Still experiencing urgency incontinence for lack of a better description.
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Been on cellcept for 14 months plus 7.5 prednisone going to 0 in 4 months. Takes 6 months to a year plus to get the full effect of cellcept. Haven’t taken mestinon for a couple of months. I have trouble walking with an uneven gait and balance are the only symptoms now plus the weakness or fatigue. 71 years old and 18 months since MG crisis and diagnosis.