out to pasture

[alice md]

I sincerely believe that unless a rich celebrity comes down with MG we're not going to see much for new cures / management in our lifetimes.

Well, we can always hope for that... (just joking).

I am more optimistic than you, not because I think there is going to be much research in MG specifically (you are probably correct about that), but because I think there is a rapidly growing understanding of the immune system and some research into energy metabolism because of other diseases.

I am not sure what is "most", but at least according to the medical literature the overall sustained complete remission rate (which is probably not true remission in many who still suffer from "unexplained" fatigue) is 20-80% (this large range is because there is a very big heterogeneity in the way remission is defined and there is no standardization of the studies).

The facts are for most of us, a thymectomy leads to remission.

I do not think there is such an agreement. If that was so, why would they be doing a study comparing patients with and without thymectomy?
Like many other notions regarding the diagnosis and management of MG, this was never tested in an acceptable way.

The fact is that there is very little true "evidence based" medicine in MG, and most is based on unproven notions that may be right or wrong.

[4-eyes]

Abby---YOU push the empty wheelchair. Holding onto the handles will give you more support and enable you to walk further. Your husband will just be used to push you back home!

Yes, it's a psychological transition. However, it is better to be in the correct equipment, and be safer than to be trying to get by in a souped up walker that isn't safe or particularly comfortable. Honestly, the neighbors or even society in general think less about it than you do.

For some reason, I've never had a lot of lower body issues. I've always been able to get around OK. However, I have dealt with the "bald stuff" after my reboot. Sure, there were stares and looks, and my daughter endured a few comments at school. However, there were also deep, knowing looks that I shared with other "baldies" I'd meet while out and about. There were the little old ladies who stopped me in the grocery to ask me about "my cancer." I'd explain my situation and then they'd share their stories. Brave stories....stories that touched me deeply. In many ways, it opened up a whole new side to the world. I'm sure your situation would be similar, especially since you are clearly a sensitive person.

And lastly...with MG you just never know! You may need the wheelchair for a short period of time, or a long one. I have a friend who needed one for TEN years, but has been independently ambulating ever since. I think it's important to live in the present and deal with the symptoms you are having TODAY, and not worry as much about tomorrow, or what "so and so" had happen.

Have a great week!

[scrubbs]

Mike;

24 infusions in 8 weeks? I guess the ones responding to this thread after you posted must have heard about this type of aggressive treatment before but I never had. But I do think we all know the feeling of helplessness.

I hope for your sake, Abby is not correct, "aggressive treatment doesn't necessarily mean improvement". Maybe after the end of these treatments you will see some significant improvement. I certainly hope so. I'm pulling for you.

Tony

[pingpongman]

Just finished #19 and nothing so far. Have had a course of Imuran and now on Cellcept but just getting worse.
Mike

[Stellatum]

Re: the wheelchair: I talked to my husband about it and found out some things I didn't know about how he feels about my illness. I guess I thought he was sort of used to it, and not worrying about me, but it's not true. I was hesitant to get one, for psychological reasons. I didn't realize he was feeling those reasons more strongly than I am.

I did sort of know he felt like that at one time--I figured it out when he made me the rickshaw (you can see a photo if you click on my name). Pulling me on a rickshaw has a different feel to it than pushing me in a wheelchair.

Mike, I'm so sorry to hear that things have been so rough. How terribly discouraging. I hope there are some good surprises for you in store.

I felt really good today, for some weird reason. I really don't know why. Hormones? All those pistachios I ate yesterday? Because I got some sun yesterday? Because I really wore myself out yesterday and slept very deeply because I was so exhausted? I wish I knew.

Abby

[violet4941]

Originally Posted by alice md

We decided together that symptomatic treatment with nutritional supplements, pacing, using tools and aids including respiratory support as required etc. led to the best results so far.

Alice, what nutritional supplements do you use?

[teresakoch]

I think that before doctors are able to find a "cure" for this disease - and the sad truth is that there may NOT be a cure, per se - they are going to have to figure out if the ACh receptors are able to be revived.

Frankly, I'm not sure that can be done.

My (admittedly limited) understanding of this disease is that our symptoms are BECAUSE of the atrophy of those receptors, and most of us are pretty much playing "defense" after we finally get diagnosed.

Once I started going down this path - and before a concrete diagnosis - I looked back and realized that I had been having symptoms for YEARS (I looked back at pictures and noticed the eyelid droop between the birth of DD#2 and DD#3 - they are now 21 and 20).

As hard as it has been to do, I have finally accepted that I just might not get better; obviously I hope for a remission, but I know that I have to listen to my body.

For us, there is no "Conditioning will make it better" scenario, and trying to push ourselves can have disastrous effects.

Believe me, I understand where you are coming from - I look around my house at all of the things that I had put off doing until my kids left home, and now I am just faced with a house full of stuff that will probably never get done.

It sucks.

But every time that I start to try to do something about it, my body lets me know in no uncertain terms that it just isn't gonna happen. My mind is still railing against all of this, but I'm slowly coming to terms with that as well.

For us, the phrase "The mind is willing, but the flesh is weak" certainly applies.....

(Speaking of celebrities, take a look at recent pictures of Ashley Judd - I SWEAR her left eyelid looks droopy; I'm wondering if she has been tested for MG)

[pingpongman]

Amen !!!!!!

[Stellatum]

Originally Posted by teresakoch

My (admittedly limited) understanding of this disease is that our symptoms are BECAUSE of the atrophy of those receptors, and most of us are pretty much playing "defense" after we finally get diagnosed.

My understanding is that symptoms can be caused by damage to the receptors, but also because the receptors are temporarily blocked by antibodies. According to my own experience, this makes a lot of sense to me. Sometimes within the same hour I can walk normally, and then not even have the strength to stand up. Here's an article that discusses binding, blocking, and modulating antibodies. http://www.sarahbush.org/patients-vi...test/detail/5/

Originally Posted by teresakoch

For us, there is no "Conditioning will make it better" scenario, and trying to push ourselves can have disastrous effects.

Right. There's nothing more frustrating than to have people assume that any weak muscle can be strengthened by exercise. I personally am not willing to try physical therapy at this point--I'm just talking about my own personal situation--because the ordeal of getting to the therapist would do me in. Nothing wears me out more than driving into the Big City, dealing with parking, etc. That's my personal trigger. I can't imagine that the benefit of the PT could outweigh the cost. Again, I'm not saying PT doesn't make sense for other MGers!

But, although conditioning won't stop the antibodies from attacking, and won't improve communication between the muscles and the nerves, it can prevent the ordinary weakness that anyone who doesn't use their muscles would suffer from. So, I do think that every MG patient has to figure out how much, if any, exercise he or she can tolerate without making the MG symptoms worse. It's one reason I hesitate to get a wheelchair. 4-eyes is right that I could schedule exercise to replace the walking I don't do because of the wheelchair--but realistically, I'm not sure it would happen. We have limited resources. The things I can't do for my large family already put more demands on my husband's time and energy. Real life demands prioritizing, sometimes even the prioritizing of legitimate needs.

Abby

[Brennan068]

What PT does for us is prevents muscles from atrophying. You're right, there' no PT for the root cause; but by keeping muscles "strong" they're there to listen when the commands get through.

That said, PT is a personal choice and if you're going to use all your spoons up for the day just getting to the facility it won't be helping you.