Managing expectations
Hey folks - I'm pretty new to this, having been diagnosed with antibody positive MG in January. Currently, I am only experiencing ptosis and very occasional diplopia, both of which seem to be well-controlled by 3x daily pyridostigmine (which I tolerate well so far).
However, I've gotten a bit paranoid - thinking every new ache or pain (I'll turn 65 next month, so I DO have these now and then!) is a new symptom. I'm not sure exactly what it would feel like. I am currently not limited in my activities and can accomplish normal things like playing pickleball, doing PT for shoulder surgery I had during the summer and doing sets of pushups (e.g. yesterday I did four sets of 20 between pickleball matches) and I think my radar needs to be tuned up.
What does it feel like when you experience new symptoms? The literature seems to be rather vague, talking about weakness that is alleviated by rest - but I'm not really sure what that means, because of course I get tired and when I get tired I function less efficiently.
I wonder if folks could sort of point me toward things I should be on the lookout for. Like I said - this is all new to me and I appreciate any wisdom you folks might be able to dispense.
Cheers,
Bob
I’m a bit older than you, 73 to be exact, and developed MG very suddenly in February although I noticed a droopy left eye a while ago. I just shrugged it off. Then I had a couple shortness of breath episodes followed by chewing, swallowing difficulties and finally slurred speech. This all happened in just three weeks. Talk about sudden onset and while on vacation! Fortunately a very smart neurologist saw me and made a proper diagnosis. I started on mestinon and got immediate relief. My local neurologist has also started me on cellcept with minimal side effects. I’m able to continue most activities but am tired by days end. Bottom line this could be worse.
I’m going to follow this thread so I can learn more about what to expect. To all of you, be well.Thanks! I am really hoping and praying that my MG remains ocular and doesn't progress to generalized, but have begun to realize that is beyond my control. In the meantime, I've upped my daily mestinon dose to 1.5 tablets thrice daily - because the ptosis and diplopia were getting worse, but otherwise, things remain pretty calm. I am freaking out a bit less and think that doing my best to continue my normal activities is probably the wisest course, until and unless things change.
Bob... Awesome you are able to do so much!! Turning 61 here, and yes, we do have aches and pains just from getting older. Have you ever, in your younger years, felt the muscle pain and burn & fatigue from over doing it? Well, if you get that from just getting up in the mornings, or taking a shower, eating, brushing your teeth, etc. Or You look 5 feet in front of you, to a chair you want to sit in, and it might as well be 10 miles away.... Or that is how my body feels. I have had to literally crawl to places or just lay down where I was, to rest a little. If the symptoms I am having get worse even with the Mestinon... that tell me, I could be in a bit of a flare and need to rest.
Then there is the breathing... take a normal breath in and see how far you can count out loud (not fast, just normal.) normal is 50 or over for most people. My base line on any given day/time is 20. Under that I am a little concerned, especial in the teens... Hoping you never experience anything but the Ocular!! Best Wishes!! Sally Farrier...Myasthenia-Gravis.com (team member).Hello, how wonderful you are able to be so active. I can share with you my experience with Mg. The only pain I have occasionally is in my hips or neck, they feel like a strain or soreness nothing overwhelming painful. I have had foot and leg cramps that would make you pray but they do go away. Fatigue is my nemesis, to me it feels like gravity is pulling me down. Limbs feels very heavy. I have explained it as “ my body feels like wet sand” additionally I did not have balance. I could feel when a floor was not level. I was very sensitive to that feeling to the point that I could not walk unassisted. I have had many of the other characteristics of Mg as well but no pain with ptosis, discomfort in throat,double vision and nasal speech. Steroids can exacerbate my symptoms. To date, I am getting Vyvgart infusions and take MestinonER, Cellcept daily. I can function but am in now way back to life. Praying Vyvgart continues to improve things and I get my life back.
Be well
