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...
Hiya.... so where to start im 27 years old and after 13 months of tests etc... i was diagnosed with MG with positive anti MUSK. (Not that im sure what the MUSK bit actually means)
Its been a whirlwind of emotions, not sure how iv coped but im still here which is a postitive.
Iv been through a bad patch, hospitalised with severe double vision and unable to swollow liquids or solids. Ivig started immediatly but sadly after the first in infusion i was kept in hospital as i then caught chemical meningistis, very poorl and scary time for me. Im now being refused this treatement in the future as theres a high chance it could be repeated
So now im currently on 40mg every other day of prednisilone.
Its hard and confusing as my neuro wants me to lower my dose but i feel that even 40mg is holding me on by a thread... double vision is still present but only when i look to the side swollowing is much better but still very tired all the time and numbness in my arms.
Why they want me to lower my dose im unsure of and iv explained that i know 100% my symptoms will return with slightest drop in dosage.
No body listens to me im scared!
Im a working mum with a 6 year old daughter... im trying to carry on as normal as i can but i feel its all getting to much.. mentally, physicaly and financially. Im at thr point where i just want to lock myself away from everything and just give up!!
Excuse my spelling and grammar. Awful i know.
Its been a whirlwind of emotions, not sure how iv coped but im still here which is a postitive.
Iv been through a bad patch, hospitalised with severe double vision and unable to swollow liquids or solids. Ivig started immediatly but sadly after the first in infusion i was kept in hospital as i then caught chemical meningistis, very poorl and scary time for me. Im now being refused this treatement in the future as theres a high chance it could be repeated
So now im currently on 40mg every other day of prednisilone.
Its hard and confusing as my neuro wants me to lower my dose but i feel that even 40mg is holding me on by a thread... double vision is still present but only when i look to the side swollowing is much better but still very tired all the time and numbness in my arms.
Why they want me to lower my dose im unsure of and iv explained that i know 100% my symptoms will return with slightest drop in dosage.
No body listens to me im scared!
Im a working mum with a 6 year old daughter... im trying to carry on as normal as i can but i feel its all getting to much.. mentally, physicaly and financially. Im at thr point where i just want to lock myself away from everything and just give up!!
Excuse my spelling and grammar. Awful i know.
Getting a diagnosis is huge, now you and your Neuro just have to find that treatment "sweet-spot" that works for you. Until you get to that point, you need to rest and nap during the day when possible. I know that's easier said than done w/ a 6 year old and job responsibilities, but until you get over-the-hump you will need some help. I hope and pray you have a support network you can lean-on for a while.
Like TBreak said, once you find out what works for you, things will get better!
Relax. Worrying makes our condition worse.
Keep us posted. Take Care. Chris.
I would get second opinion or at least get a good exclamation as to why he is doing reduction in prednisone and seriously express concerns to a point that you ask him to consult with another neuro on your treatment plan.
I definitely see your point.
Are you on cellcept or mestinon?
It is mandatory.