How Was Your Week?Posted by bns-staff on April 15, 2022 at 3:44 pm
How was your week? Do you have any victories you’d like to share? Any setbacks you’d like some advice on?
MemberApril 15, 2022 at 8:22 pm
<p style=”text-align: left;”>Major victory for me was to finally see a new neurologist that was recommended by my MG support group leaders. I must say that after my first appointment I’m very impressed and so glad I made the change!</p>
MemberApril 15, 2022 at 8:52 pm
This week has definitely been harder than usual. The morning after my colonoscopy exam, I woke to find my MG symptoms were much worse. My eyelid drooping let me see only a very little and arms/legs were much weaker (making walking/carrying things difficult). Though I’ve improved, I’m still not back to where I was before the proceedure. I assume that this was caused by the anesthesia – even though I explained to the anesthesiologist beforehand that MG patients frequently have adverse anesthesia reactions. The good news is that I won’t need to do this again for another 3 years!
MemberApril 15, 2022 at 9:08 pm
Big relief this week as I received the EvuSheld injections! As I am now tapering down Prednisone (and transitioning to CellCept), my immunity is pretty much zero. EvuSheld makes COVID much less of a fear. Still need to worry about colds and flu though. Masking up will still be important going forward.
MemberApril 15, 2022 at 9:48 pm
My MG did not change much — some more weakness and pain in my arms and shoulders. I continue to taper off of prednisone.
There’s no peace of mind while the brutality in Ukraine continues — and the threat of insane Russian escalation. We’ve bought a solar/crank emergency radio and are working on our emergency plan.
MemberApril 16, 2022 at 1:19 am
After over a year of trying to find treatment and doctors, I found them! I had a chest x-ray that showed a mass. The doctor that did that sent me to a cancer specialist and I did a chest CT which showed the mass on my thymus and masses on both adrenal glands and thyroid nodules.
The cancer specialist was amazing! He has set me up with a neuromuscular specialist, a neuro ophthalmologist, and I found an endocrinologist for the thyroid and adrenal masses.
I am scheduled to have a robotic thymectomy on May 25th. Seems a little strange to be excited about surgery, but I’m so excited that progress is being made!
MemberApril 22, 2022 at 10:31 pm
This week I received the third IV of the new drug Vyvgart. I am still seeing a great improvement over everything else I have tried. I will receive my fourth IV next week and that will be it until I need it again. This drug is a miracle for me, and I hope everybody gets a chance to try it and that they will have the same results.
MemberApril 22, 2022 at 10:54 pm
You lucky dog, Gary! I hope it continues to go well for you. Since, I’m seronegative gMG, it’s not an option for me right now. I don’t know if the FDA will extend the approval for seronegative patients. But, think my doctor is hesitant to have me try it anyway for now. Later, I’ll have to wait and see…
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