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...
Felt it important to simply share my latest visit with the Neurology Department at Shands, as I had another appointment yesterday.
My doctor told me that it is conclusive that I do in fact have MG. He asks that I stay on the same dosage of Mestinon, which is 90mg, but to increase it to five times a day. Then, once I've adjusted to that dosage, and returning in October will start me on Steroids.
We additionally discussed my Polyneuropothy, and sucked out a ton more blood for the source of the neuropothy before presecribing medication, or therapy.
Have also been experiencing quite a bit of lower back pain, though we MG's don't experience any pain...............wink, wink, wink.
So, we move forward toward a measure of relief, but once again it's wonderful to be able to share, but more importantly hear what everyone else is experiencing as we march this road together.
Cheers,
Bill
My doctor told me that it is conclusive that I do in fact have MG. He asks that I stay on the same dosage of Mestinon, which is 90mg, but to increase it to five times a day. Then, once I've adjusted to that dosage, and returning in October will start me on Steroids.
We additionally discussed my Polyneuropothy, and sucked out a ton more blood for the source of the neuropothy before presecribing medication, or therapy.
Have also been experiencing quite a bit of lower back pain, though we MG's don't experience any pain...............wink, wink, wink.
So, we move forward toward a measure of relief, but once again it's wonderful to be able to share, but more importantly hear what everyone else is experiencing as we march this road together.
Cheers,
Bill
(yup - a strange situation, when bad news - is actually good news.)
Your neurologist seems to be following a measured, logical approach.
Until October? Unless your symptoms - become more bothersome?
It seems your neurologist - wants to see - just how much Mestinon, by itself - will help you.
(MG = the ''Snowflake'' disease. Lots of individual sets of symptoms, lots of individual sets of meds, lots of individual medical approaches to treatment.)
Keep us posted, please!
- Ross
(... I take Gabapentin/Neurontin - for my Polyneuropathy ...)
Yes, he said October, thus giving me time to adjust to taking the Mestinon 5 times per day, as compared to 4 times. Plus, we've been trying to get out of town, so will take advantage of that too. I just hope I can find mental comfort through my pretty constant discomfort, and I know you know what I mean.
It seems that there are more of us there carrying Polyneuropothy with our MG then the doctors like to admit. He refuted that statement when I brought it up to him yesterday, saying that they do not reside at together. I do like, trust and respect my neurologist alot, so far though. But it's through forums like this that we are exposed to the real facts, based on true life experiences.
Bill
(Former Vermonter)
I'm just so glad you have a definitive answer! It makes a huge difference and, when the blood tests are all negative, it is a relief. A relief too to know it isn't something more mean and threatening. MG is mean and threatening enough.
Feel better!
Cathi
My back pain went away with Mestinon temporarily and completely with the steroids. I have had a bit of recurrence with tapering. My back pain was at the end of the day trying to sit at the dinner table. I think it was due to weakness. I am sure we have other causes as well! b.
I know there are times when my back hurts and it is the muscles.. I ususally have to go sit or lay down until it passes.. I am thankful it does now happen too often.
take care,
Annette
Thank you all for the support, and words of encouragement. As you know, we all need them; my problem had been that I generally was always the one providing the words, not receiving them.
Cheers,
Bill
I so understand where you are coming from.. Even after 2 years of this lovely disease I still can't get use to the idea that I am sick ...
We are all here for you and appreciate that you are here for us.. I pray your back pain gets better and if it doesnt you may need to get it checked out.
hugs,
Annette
Congrats on your diagnosis and plan for treatment!
Love, Becca
Isn't it horrible that we do take pause to smile for the diagnosis of MG? But, we all certainly do understand, don't we! This is one strange disease, and it's sure hard to wrap our minds around it's many complexities, plus getting the total understanding from friends and family. In my case, I couldn't understand why I was flat our FATIGUED immediately after starting my 8 weeks of cancer treatments last year, when no one else did. I tried driving home that first weekend, and feel asleep twice at the wheel at 11:00 a.m.. The cancer doctors told me to have my thyroid, heart, and vitamin levels checked..................Any way............
Ordered my Medical ID bracelet, thanks to Cathi, and am planning on meeting many of you in Atlanta in November.
Bill
Two things regarding back pain and transitioning from sitting to standing and getting in and out of bed. First, tighten your stomach muscles to protect and brace your back. Second, when getting in/out of bed, do in two motions - lie on your side first then roll onto back. Getting out of bed reverse by rolling onto side then sitting up. Definitely call your doc and get checked out.
Annette
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/14732456-ga-chapter-meeting-november-3
Cathi