[StephC]

Every thing I have read about MG says "with treatment most people can lead relatively normal life" however the more I read and Live with this illness I think normal life isn't the normal I had before MG got so bad. I used to ride my bicycle 10 miles, go horseback riding for 6 hours. Will I ever be able to do those things again?

I am sole practitioner lawyer and had very busy practice working about 40-50 hours per week. I stopped taking new cases about 2 months ago. Will I ever be able to go back to 40-50 hour work weeks ?

I have started therapeutic trial of mestinon and seem to be responding meaning I feel like I can function but even so only couple hours work before I am drained whereas before I was workaholic.

[alice md]

Originally Posted by StephC

Every thing I have read about MG says "with treatment most people can lead relatively normal life" however the more I read and Live with this illness I think normal life isn't the normal I had before MG got so bad. I used to ride my bicycle 10 miles, go horseback riding for 6 hours. Will I ever be able to do those things again?

I am sole practitioner lawyer and had very busy practice working about 40-50 hours per week. I stopped taking new cases about 2 months ago. Will I ever be able to go back to 40-50 hour work weeks ?

I have started therapeutic trial of mestinon and seem to be responding meaning I feel like I can function but even so only couple hours work before I am drained whereas before I was workaholic.

When you have MG (or any other chronic illness for that matter), you can either go into remission or not. If you are not in remission you can still have a good control of your illness with minimal symptoms or not achieve such control.

Will I ever be able to go back to 40-50 hour work weeks ?

I do not think anyone can give you an answer to your question at this early stage of your illness, when it seems that you have not started to receive any treatment (other than symptomatic treatment which can control the symptoms but will not lead to remission).

If with proper treatment you will have remission/good control of your illness it is likely that you will be able to resume most of your work schedule. If not, you will probably have to make proper adjustments.

[scrubbs]

With treatment most people can lead a "relatively normal life". You read this statement on numerous websites about MG and I, for one, do not believe it unless you go into remission.

My opinion and experience. Prior to acquiring this disease, your muscles are strong.
Initially, you will have fluctuating weakness in your voluntary muscles and you can have times when you may be able to do normal things, not often, like you have no illness at all. At these times, you will still fatigue faster and require rest sooner because your strength just expires. Before you became ill, you could do a lot more and not feel as bad.

I think we can stay flexible by stretching but, because we do not have the ability to build muscle strength through exercise, the muscles just keep getting weaker.

With treatment or for some other reason you may become stabilized. I am considered "stabilized".

Now, at rest, I feel almost normal but, because I am still not able to build up my muscles, I notice any activities including walking causes my muscles to fatigue at a much faster rate which requires rest much sooner and I believe that even though my disease may not be getting worse, my muscles are still getting weaker and they will continue to get weaker.

So as time goes by, my not so "relatively normal life", my life will become much more less "relatively normal".

Even sitting on the floor playing with my dog causes exhaustion.

Scrubs

[StephC]

Originally Posted by scrubbs

With treatment most people can lead a "relatively normal life". You read this statement on numerous websites about MG and I, for one, do not believe it unless you go into remission.

My opinion and experience. Prior to acquiring this disease, your muscles are strong.
Initially, you will have fluctuating weakness in your voluntary muscles and you can have times when you may be able to do normal things, not often, like you have no illness at all. At these times, you will still fatigue faster and require rest sooner because your strength just expires. Before you became ill, you could do a lot more and not feel as bad.

I think we can stay flexible by stretching but, because we do not have the ability to build muscle strength through exercise, the muscles just keep getting weaker.

With treatment or for some other reason you may become stabilized. I am considered "stabilized".

Now, at rest, I feel almost normal but, because I am still not able to build up my muscles, I notice any activities including walking causes my muscles to fatigue at a much faster rate which requires rest much sooner and I believe that even though my disease may not be getting worse, my muscles are still getting weaker and they will continue to get weaker.

So as time goes by, my not so "relatively normal life", my life will become much more less "relatively normal".

Even sitting on the floor playing with my dog causes exhaustion.

Scrubs

I can relate to almost all you say, I have 3 dogs and they can't understand why no more 1-2 mile walks twice per day.

.of course we can all hope for remission but I don't understand that at all (how, why, when, how long, etc) but it seems to me even if you do go into remission it is always possible at any time to come back so to me seems like it is better to be realistic instead of waiting for my normal to return? Also all the with treatment patients can lead relatively normal life statements online make newly diagnosed patients/family/friends expect I take some rx and all is better.

I prefer to figure out how to make best Out of the situation But that is not possible unless I know what situation is.

Thanks again, be well and take care.

[Brennan068]

MG remission is different from classical remission (cancer remission = no more cancer.) Our bodies create antibodies all the time and some of them attack the neuromuscular junction... this is just the way it is. A MG "remission" is when your condition is well controlled and stable. It is really the wrong term to be using, but we do and a lot of our neuros do too.

As I understand it, the only hope for a real remission is to blow away the immune system with chemo therapy drugs and rebuild it. This comes with its own risks obviously. For me, this is not worth it - my MG is not bad enough to justify this gamble. If it were, I'd reconsider.

I'm in "remission" in that I get through the day on mestinon only and my MG is not getting worse. I work 8-10 hours everyday (from my home office so that I don't pick up anything nasty from the work office.) I can comfortably walk 3 miles once or twice a week and during the winter I can go skiing with my daughter. BUT I still have some rough days and wouldn't think of going for my 5km walk on one of them. The trick is to learn to listen to your body and if it is saying "don't you dare" ... just don't (you'll pay for it on the other end.)

So, yeah, a lot of people would say I live a "normal" life... it can happen.

[southblues]

I think that it is hard for me to get back to "normal" because I am letting this thing get to me mentally. Sometimes I could do more, but I don't because I don't know what to expect.

[Jenn220]

Originally Posted by StephC

Every thing I have read about MG says "with treatment most people can lead relatively normal life" however the more I read and Live with this illness I think normal life isn't the normal I had before MG got so bad. I used to ride my bicycle 10 miles, go horseback riding for 6 hours. Will I ever be able to do those things again?

I am sole practitioner lawyer and had very busy practice working about 40-50 hours per week. I stopped taking new cases about 2 months ago. Will I ever be able to go back to 40-50 hour work weeks ?

I have started therapeutic trial of mestinon and seem to be responding meaning I feel like I can function but even so only couple hours work before I am drained whereas before I was workaholic.

I agree with Alice's response - it depends on how you respond to treatment and what treatment you try. If you're just on Mestinon, then, it sounds like you're just starting and you probably need something else, like prednisone or another immunosuppressant. There's no guarantee how well you will respond to the treatment until you try it. I've been blessed that (1) my first neuro was aggressive in treating my MG (starting me on prednisone / imuran early on, with IVIg and lots of Mestinon) and (2) i've responded well to the treatments.

I'm also an attorney, but I work in BigLaw. I was diagnosed while practicing in BigLaw, and have continued working in BigLaw. My firm / practice group was very understanding and worked with me through diagnosis and initial treatment, and now 3 years after diagnosis I'm doing pretty well with it, though I do have to make adjustments now and then. Oh, and I also am pretty active with other stuff - volunteering, exercising, ballroom dancing, etc. I had to work my way back up to most of that - it wasn't an immediate thing after getting sick, but.... anyways. There's no guarantee you'll respond as well, but, hopefully that gives you some encouragement.

[Kim12]

Looks like there are a few attorneys here. I stopped practicing two years ago after 20 years, all of them with MG. MG didn't impact me until the last 4 years. I found that it wasn't only the physical demands. It was also the mental. I would be exhausted after a half day trial and need to go home and to bed. The intense focus and concentration would wear me out.