How long before you were diagnosed?
Hello, I am newly diagnosed and new to this forum. I started having double vision & a droopy eyelid in mid February and was diagnosed with MG 2-3 weeks later. I am wondering how long it took you between the first noticeable symptom and a definitive diagnosis for MG? And did the time elapsed affect your treatment regimen? Just trying to get some idea of what’s ahead. Thanks !
I was pretty diagnosed the day i went to the hospital with double vision. I had never heard of MG but the symptoms, besides the double vision, the difficulty chewing, which i had thought was just un-related, well not to the doctor. He put me on that pyr drug and 2 hours later my double vision went away. The actual diagnosis came from a blood test 2 weeks later, but it was pretty much a done deal. And I highly doubt any short term delay would drastically effect your treatment. MG, at least for me took months to come on full force, at first it was just an annoyance, but it progressively got worst as months went by until I could barely speak and pretty much could not swallow liquids or solids. The entire time i was ramping up on prednisone but the more I took the worst it got (just MG kicking into gear faster than the prednisone could slow it). What turned the tide for me was the IVIG treatments. After those started, I am definitely weaker than i used to be, climbing stairs gets me out of breath, i'm definitely not hiking 4k peaks any more, but I can talk, and eat and drink normally again. As long as i don't do strenuous activity, i'm pretty normal, just a weaker and far more out of shape person than i used to be. When/if you get to the point of choking trying to swallow pudding, and can't talk for more than 30 seconds before you can't speak.... Getting back to speaking and eating normally, is a blessing. Hopefully if you start getting worst, you can get scheduled for IV treatments before it gets as bad as it did for me. But at the same time it makes you realize, that even if i'm not 100% of where I was a year ago, i'm 90% better than were i was.
That is great they got you on IVIG before it got bad, but with MG it effects people differently, i know some people who only suffer the double vision part and do not have other symptoms while others struggle to do things like standing up from a chair. I consider myself more middle of the road, my worst symptoms are all around my mouth, although i get winded easily i can get up and walk as long as i don't go too far. But getting you on IVIG early, hopefully prevents you from getting worst.
My Dr has/had me on IVIG to cover the gap of putting me on long term treatment drugs. At first we tried cellcept, which takes 6-9 months to fully kick in. I was on cellcept for about 2 months and my heart rate went from 70's to 130 while sitting doing nothing, apparently high heart rate can be one of the side effects of cellcept, so we have switched away from cellcept to Imuran, which also takes many months to build up. I believe once that builds up, we will try to space out and/or stop the IV treatements, but that is a ways off, as I have only been on Imuran for less than a month, but my pulse is back down into 80's (which is a good thing).
Hoping the IVIG treatments keep you feeling fairly normal! Good luck.Thank you for the reply and the kind wishes. I’m glad the Imuran is helping you so quickly. That’s great! I tolerated the IVIG really well during the infusions but now, I am 1 1/2 weeks out from my last of 5 days and have been very fatigued since Saturday. Saturday morning I felt great and went out and did too much and paid the price. So idk if it was the infusion or the activity but I’ve been tired since Saturday night. Seems like the Mestinon helps me a lot, I’m still waiting for the IVIG to have an effect. Any idea how long it should take ?
