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...
So many helpful people here. I invite anyone to comment on my second trip to my neurologist yesterday. I want opinions or experiences. Even negative ones.
Everyone thought I had a stroke on Oct 28. The ER even did a CT to check for bleeding in my brain before giving me that dangerous tPA.
I survived the tPA and about 30 hours in ICU. Went back to work following Monday - only missed 4 days. Speech gets terrible when I'm tired, so everyone 'knows' it was a stroke, right?
SO - my 'sleep study' neurologist ordered the blood tests for acetylcholine binding (whatever) and after 4 days of waiting, I was told I had MG!
Can't squint, have trouble swallowing, and can't speak for more than 30 seconds.
Went to different neurologist (specializing in MG) and cancelled my sleep apnea study, etc. He put me on 20mg prednisone and pyridostigmine right away.
Lost a lot of sleep worrying. Worried every morning at 2AM that I might wind up choking to death if swallowing got worse.
THEN I MET A CO-WORKER, who as it turns out, has a father with MG. He told me that stress can worsen symptoms and recommended exercise, diet, yoga, whatever, to lower my anxiety.
Since I made up my mind to 'soldier through' my episodes of speech and swallowing problems - it does seem, so far, to have a good effect.
Either my symptoms are actually improving -or- I'm not letting them 'get to me'. Either way is fine with me. (even if it's just the meds finally kicking in).
I've gotten over my fear, which lets me sleep much better - and that, I think, really improves my symptoms. What do you think?
I saw my MG neurologist for the 2d time yesterday. He agreed that I've improved and did several significant things:
- upped my prednisone from 20 to 30mg each morning
- added a new drug - azathiaprine: work up to full dose over 3 weeks
- said that his goal was to get me completely off prednisone in a couple of months
- gave me permission to go up to 300mg per day of the pyridostigmine if I felt I needed it
- told me that he was confident we could get the symptoms down to zero with time and meds
- agreed that, although my CT scan showed no thymoma, that thymectomy can result in the best overall long-term outcome (which surpised me, since I'd imagined a lifetime of special drugs and fighting off infections like 'The Boy in a Bubble'). He said no. It might work great - although I'm slightly over the max 60 year age limit normally recommended.(I'll be 64 next week). then he said something interesting the the thymectomy context: That there is more than one approach. I assumed he meant radiation? Or perhaps laparoscopic surgery vs tratidional?
ANYONE ELSE HERE done any type of thymectomy?
Thanks, Everyone
Everyone thought I had a stroke on Oct 28. The ER even did a CT to check for bleeding in my brain before giving me that dangerous tPA.
I survived the tPA and about 30 hours in ICU. Went back to work following Monday - only missed 4 days. Speech gets terrible when I'm tired, so everyone 'knows' it was a stroke, right?
SO - my 'sleep study' neurologist ordered the blood tests for acetylcholine binding (whatever) and after 4 days of waiting, I was told I had MG!
Can't squint, have trouble swallowing, and can't speak for more than 30 seconds.
Went to different neurologist (specializing in MG) and cancelled my sleep apnea study, etc. He put me on 20mg prednisone and pyridostigmine right away.
Lost a lot of sleep worrying. Worried every morning at 2AM that I might wind up choking to death if swallowing got worse.
THEN I MET A CO-WORKER, who as it turns out, has a father with MG. He told me that stress can worsen symptoms and recommended exercise, diet, yoga, whatever, to lower my anxiety.
Since I made up my mind to 'soldier through' my episodes of speech and swallowing problems - it does seem, so far, to have a good effect.
Either my symptoms are actually improving -or- I'm not letting them 'get to me'. Either way is fine with me. (even if it's just the meds finally kicking in).
I've gotten over my fear, which lets me sleep much better - and that, I think, really improves my symptoms. What do you think?
I saw my MG neurologist for the 2d time yesterday. He agreed that I've improved and did several significant things:
- upped my prednisone from 20 to 30mg each morning
- added a new drug - azathiaprine: work up to full dose over 3 weeks
- said that his goal was to get me completely off prednisone in a couple of months
- gave me permission to go up to 300mg per day of the pyridostigmine if I felt I needed it
- told me that he was confident we could get the symptoms down to zero with time and meds
- agreed that, although my CT scan showed no thymoma, that thymectomy can result in the best overall long-term outcome (which surpised me, since I'd imagined a lifetime of special drugs and fighting off infections like 'The Boy in a Bubble'). He said no. It might work great - although I'm slightly over the max 60 year age limit normally recommended.(I'll be 64 next week). then he said something interesting the the thymectomy context: That there is more than one approach. I assumed he meant radiation? Or perhaps laparoscopic surgery vs tratidional?
ANYONE ELSE HERE done any type of thymectomy?
Thanks, Everyone
Exercise is an individual thing. There were months (hate to say it but years) I couldn't do much walking at all. Now 3 years later I swim 3 times a week and it makes me stronger. There was a time that exercise didn't work because it took all I had and I couldn't live and do it too.
I got a wonderful message from A2 which caused me to pretty much put the thymectomy issue to bed.
Here's how ignorant I was of my own body. I had read the radiology report, but did not understand that "no thymic mass" did not mean "no mass (tumor) on my thymus" it meant no thymus!
My CT with contrast showed: "The prevascular/retrosternal fat is normal. No evidence of residual thymic tissue or thymic mass." and at the end of the report: "IMPRESSION: NO RESIDUAL THYMUS OR EVIDENCE OF THYMIC MASS."
The message from A2 caused me to go back and re-read the readiologist's report and then Wikipedia, which I now understand better...
"The thymus is largest and most active during the neonatal and pre-adolescent periods. By the early teens, the thymus begins to atrophy and thymic stroma is replaced by adipose (fat) tissue. Nevertheless, residual T lymphopoiesis continues throughout adult life."
So, according to the radiologist, mine is gone - and "thymectomy" would be pointless/impossible, eh?
What a relief.
"A God send"
The beauty of being ignorant on any matter or subject is - I get to learn at least something from almost anyone who actually knows anything - because I don't know anything at all (yet).
Thank you.
I've received 2 PMs on this plus your posts, wbdolphin - and am grateful for this site and your knowledge.
Now my decision becomes fairly difficult:
- I've heard that the adipose tissue that replaced my 'thymus' is still performing some thymus duties, and that perhaps in this degraded state (no clearly-defined thymus), is responsible for the MG (and I'm going to go out on a limb and guess lots of other Auto-Immune problems).
- I've heard that since it is a mushy bunch of fat cells, the best way to 'get it all' is the most-invasive surgical technique (which for me, carries the most risk).
(* sigh *)
This website is providing a fantastic resource.
I owe so many thanks to all who are helping me to learn; (and I would say that it is emotionally beneficial to meet others so that I don't feel alone in the world with these new and mysterious symptoms).
I would say that IF you feel strongly about having a thymectomy, don't be scared into having such a high risk method of surgery, especially if you don't have much/any visible thymic mass. A minimally invasive procedure might be considered a better risk/reward trade-off for your situation, if you/your neuro/your surgeon decide a thymectomy has potential value.