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
Welcome to the MG world. There is a light at the end of the tunnel (no not that light) and there will be a time that your life is nearer to normal.
I am only on Mestinon for my MG, but have been offered a strong immunosuppressive drug that I will use if I get much worse.
For now, I'm able to deal with just the Mestinon. I do have trouble with swallowing, speech, and breathing, but have not had a "crisis".
I'm glad you were diagnosed quickly. I would do more research on the thymectomy and maybe even get another MD opinion.
I have a clean CT and have not been offered that option, but I would consider it if it was on the table. (thinking I may not have to take drugs for the MG if the thymectomy did the trick!)
Anyway, welcome to the board!
Blessings,
Carly
fed up with me after a while. It wasn't until my EMG was off and
my eye droop was apparent that I was treated with respect!
I'm sorry you had to go through those scary times too.
Carly
You are correct on the thymectomy potentially helping and that age does play a part in how much benefit might be achieved. As noted there are 3 different surgical approaches which include going through the chest, like heart surgery, coming down through the neck with specialized tools and using an approach which uses the surgical robots, this approach usually goes in between the ribs. Keep in mind that not everyone that has a thymectomy can stop all meds, but there is evidence that many will improve, but the improvement can take up to a couple of years to be noticed.
Its good you are starting on Azathioprine (imuran) and don't worry its no boy in the bubble med. Imuran like other immune suppressants are just that suppressants, they nudge and slow down the immune systems ability to target your own tissues, this is called an autoimmune reaction. Many people take Imuran for a lot of conditions, I have been taking it for 5 years now, I started it to help control Crohn's disease and to date I have had no extra infections or illnesses with it. Imuran has been around since the 50's and is quite well understood. It is a much better choice than long term steroids, prednisone can really cause problems when used over the long term.
Mestinon is a good safe med that you can use a lot of as needed and really has no major side effects. If you take too much though it can temporarily worsen your symptoms, but thats at pretty high doses (15+ tablets a day) Keep in mind Mestinon only helps mask the symptoms it does not help reverse the disease, the prednisone and Imuran do that.
You are so right that anxiety can worsen MG, anxiety makes any condition worse as it erodes our minds coping mechanisms, its great you are addressing it.
Overall you are on the right path, the right meds and are are asking the right questions. Don't worry about being on Imuran, its a good med thats widely used, just keep up with your periodic blood checks. It wont lead to constant infections or getting more colds etc.
Welcome to the group and certainly feel free to ask any questions that come to mind.
Joe
I am over 20 yrs younger, normal thymus and a male and never considered it after speaking with my Neuro and doing massive amounts of research. Show me some studies that support this recommendation. Love to see it!
Almost two years ago to the day I had robotic thymectomy due to thymoma at age 55. My symptoms have since progressively worsened but are well managed with medications, mestinon and Cellcept.
On this site you can also join the Myasthenia Gravis Links Group where you will find valuable information.
Word of caution, "soldiering through" anxiety and stress may be beneficial in managing mindset but the same may not apply to physical weakness. Pushing through weakness and fatigue can actually work against us. Learning to rest both body and mind was difficult for me to learn but as essential as my medication regiment.
Take care and again, welcome.
Larissa
You guys are terrific!
Thanks, Larissa, Katie, Joe and all of you.
As to cgreens concerns (which I share - which is why I'm asking)...
I intend to dig up supportive articles on thymectomy and post links when I get a bit more time.
Sure glad I found DS.
The success of the procedure first is not well studied at this point, from what I can find there is a collection of small observational studies which are basically anecdotal in nature, but have shown some positive trends especially in younger females exhibiting good results. Thats not to say that there have been good outcomes for males as well. In the end its not the "science of medicine" but more of the "Art or Medicine" Few things are black and white.
There is a large well controlled multi-center study currently underway that should answer this question with more authority, but it will take some time yet to yield any results.
Right now Ocean I am in the process of switching from Imuran over to Rituximab and Methotrexate. These are immune suppressants as well, but a bit on the stronger more targeted side than Imuran. In my case I developed MG while being on Imuran already for several years for Crohns. It most likely helped keep the initial MG intensity down, but I now also need IVIG every 10 or so weeks to keep things managed. For some Imuran can lose some of its effectiveness after many years of use.
Well I've blabbed on long enough, it really does sound like you are well educated and have things lined up for the best outcome. It also sounds like your neurologist is right on target with your treatments.
Take care
Joe
Just wanted to offer a thought about "soldiering through" the symptoms; make sure that having a positive attitude toward your symptoms doesn't lead you to ignore things that can be dangerous. For the first several years after being diagnosed, I refused to change my daily life at all, and unfortunately I really allowed my disease to progress to a scary point, a point at which I had to be a great deal more careful than I was initially. Had I shown my body a little more respect earlier, would I have still ended up at this point? Who knows, but when it comes to problems swallowing or breathing or falling, that's stuff to take seriously.
Lots of luck to you with your treatment!
Welcome to the group. Stress really negatively impacts me. I found myself worrying so much at first, As I journaled my thoughts I was more scared of how it would effect my future than how it was effecting my present. I then focused on present.
Swallowing issues are scary. Taking maximum dose of mestinon, taking it all night, and cutting down on talking and eating soft foods helped me.
Glad to hear treatment worked.
Sounds like you are in good hands. Going up slowly on prednisone is something many of us wish we could have done.
Thymectomy worked well for me. Because I have had a couple crisis with hospital stays I am always glad I did all I could do as far as treatment is concerned.
Take care and always remember .....if you ever feel breathing issues
call neuro.
Ann