Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi all - well I'm in the hospital, my second crisis since my first one in January.
I was admitted this late afternoon and am spending the night in the ER bc there are no beds in the "step down" area of the neuro floor. I'm not bad enough for the icu but too involved for a regular floor room.
They want to place a nasal feeding tube due to their concerns of me aspirating but I am not on board with that as i am not actually choking on my food - just need to clear my throat a lot. Liquids are fine. I clear my throat a lot even without eating at this point.
Even though I have had a very difficult time with side effects from IVIg in the past and just recently discontinued monthly infusions in April, this is the course of treatment we are going with right now but with a different pre-infusion protocol.
My pulse ox levels are staying at around 93/94 at this point
They are planning for a 5 day treatment.
I was admitted this late afternoon and am spending the night in the ER bc there are no beds in the "step down" area of the neuro floor. I'm not bad enough for the icu but too involved for a regular floor room.
They want to place a nasal feeding tube due to their concerns of me aspirating but I am not on board with that as i am not actually choking on my food - just need to clear my throat a lot. Liquids are fine. I clear my throat a lot even without eating at this point.
Even though I have had a very difficult time with side effects from IVIg in the past and just recently discontinued monthly infusions in April, this is the course of treatment we are going with right now but with a different pre-infusion protocol.
My pulse ox levels are staying at around 93/94 at this point
They are planning for a 5 day treatment.
Good Luck
Take Care
Chuck
When I woke up this morning after my first infusion I was doing considerably better - I am able to talk and breathe much better than I was yesterday I am still having difficulty but I am doing much better than I than yesterday . the doctor was pleased my progress after my first infusion. I will be in here for a full five days.
Xoxoxo
Annette
Glad the plasmapheresis is helping you. That's tge 'drug of choice' for me, too. It's amazing the difference between before and after. Hope you continue to improve.
A speech therapist taught me that.
Speech therapist were very helpful to me with feeding issues.
Dee
I know not all doctors, not all insurers, not all hospitals - are up to speed with Rituxan, or even other therapies.
Earlier studies re: Rituxan - show very positive results.
We are seeing those reports, here on DS. Not always successful for everyone, but for many. (Rituxan literally saved me.)
I mention Rituxan, because you sound like a good candidate.
Hang in there.
(Yes, have the therapists tried thickeners with you? There is even thickened water!)
When I came in to the ER on Friday, I also was in the early stages of a pretty bad uti - the hospital neuro is suspecting that the uti and nonresponse to steroids is what may have initiated this crises.
It is very likely that I will go back to monthly IVIg infusions with a new pretreatment regimen - I will see how things go the few days after I complete this round as that is when I typically have my difficulty that sends me to the ER. (Horrific migraines)
Keeping my fingers crossed and prayed up!! And even if I only have to go to the ER once, I'm thinking it is worth the benefit I get from the infusions. What is everyone else's thoughts on that?