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Myasthenia gravis is a unique illness. All of us living with MG have varying illness experiences. I have dealt with frustration, feeling like the odds are stacked against me often, and I have also been very grateful for the lessons MG has taught me young. So I would describe my journey living with MG as illuminating, demanding, and rewarding.
How would you describe your perspective of life with MG in 3 words?
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1.-Frustration: it was annoying not know what was happening to my body for over 3 months.
2.-Discovery: I had to learn to listen to my body and to be more conscious of my every day habits.
3.-Appreciation: I was pushed to appreciate the little things in life I didn’t have or couldn’t do after myasthenia gravis. I also had to work on my anxiety and for that I’m very grateful.
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My words have already been stated, accept I might include stubbornness – meaning not accepting completely the limitations imposed upon me. I try and do as much as I can, as often as I can and not allow MG to totally ruin my quality of life. This may mean rest periods, pain periods, but I want to remain independent for as long as I can. I force myself to be active, even if only for short periods of time and my activity may be reduced or limited. I refuse to allow MG to beat me.
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I haven’t figured out how to submit comments gets. seems like I entered same comments three times.
Frustrated
Unpredictable
Sometimes embarrassing
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There’s some weird issue with the forum software. It seems that if you take too long to type up your comment it seems to freeze when you submit, thus making you think it wasn’t accepted and so you’re hitting submit again, etc. What I do now is type up my comment on another app and then copy and paste it and immediately hit submit. Then I exit the forum and re-enter and find my first submission is there. If it isn’t, then I already have it typed up and can easily copy/paste/resubmit one more time. It’s usually there the first time, and it’s always if I submit a second time. I contacted the webmaster about this, but never received a reply.
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Frustrating
Challenging
RecurringLoss of control over your body is frustrating. Figuring out how to manage the issues is challenging. Dealing with it for years with no expectation of a cure is the recurring part.
Saw this from another MG patient: “It won’t always be like this.” Useful to remember when things get rough. Stuff changes. Patience and fortitude can help. So can a good neurologist.
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It’s been Hell!
I agree with all the other comments, but as bad as it is, the medications could be more deadly. I now have a terminal illness related to side effects from the medication I was on. It could have been avoided. If you see warnings on the RX package, and are actually having them. You are asked to tell your provider ( who may not investigate further), it is easy to lose faith in them.
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So sorry to hear of your terminal illness..really, really sorry. As if having MG is not bad enough. Which medication did this to you and how long were you on it?
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I was on 100 mg’s of imuran for 4 months. When it didn’t correct my double vision, it was increased to 200 mg’s a day for 1 year. That comes to 4 mg’s per Kg.( I weigh less than 50 Kg’s). Within 2 months of starting the drug, I developed purpura that covered my forearms, also nausea and fatigue that worsened each month. I requested blood work, which was refused me at the clinic. I finally asked another Dr. to run blood panels, and found my platelets were down to 37…very low, indicating liver damage, portal hypertension. My liver damage lead to several episodes of bleeding veins in my stomach and esophagus. So now I have MG and liver failure. I had an upper GI exam before starting the drug, and there was no evidence of it then. My hepatologist told me it was rare, and I am making end of life arrangements now.
If any drug gives you black tarry stools, it needs to be investigated!
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ADJUST YOUR MEDICATIONS
I found that there is no particular set of what should be prescribed for MG. Reading these forums I see several different kinds of medications as well as different doses we are taking. I’ve asked my neurologist about that and there is no answer. I have been told that there is no test that will tell me how bad my MG is. My tests for AChR and MUSK should set some kind of level for a prescription but they don’t track with what I’m taking. My symptoms are mild, if sometimes non-existent, but I have been taking about the same amounts of Mestinon and Cellcept that many others are taking, i.e., 4×60 Mestinon and 4×500 Cellcept. I’ve actually reduced my Mestinon to 3×60 and Cellcept to 2×500 and I can’t tell any difference in my symptoms. My neurologist said OK, let’s try that for awhile. It doesn’t seem like a science to me. Does it to you?
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I agree with most ALL comments. So far, I have tried Mestinon and had severe stomach issues. I am also a diabetic and Prednisone is not an option. I have tried Cellcept and experienced hyperglycemia. So current I am having plasma exchanges every 2 weeks to keep symptoms at bay. My symptoms are mostly droopy eye, neck pain and a few swallowing issues. I’m 78. Been diagnosis for 2 years. I was wondering has anyone had experience with ending plasma exchanges and not taking any medication? Did your MG get worse? I know everyone is different “snowflake” disease. Let me hear from you.
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