Visit with the myasthenia specialist (my report)

[Stellatum]

Originally Posted by AnnieB3

I totally understand the PT thing.

I knew you would. My neuro really does get MG, but like a lot of doctors, he can't bring himself to say, "I just can't think of anything else to do for you," so he says, "Well, how about a little exercise?" I say, "My street is 500 feet long. If I walk to the end of it I collapse and can't walk back. He says, "Well, how about an exercise bike?" Yep, that solves the "can't walk back" part. The proper response to this suggestion is, "You're a stitch, Doc!"

Originally Posted by AnnieB3

But what if you had a consult and then one follow up? You don't always have to have a bunch of appts. Or if you qualify for home health care, that might be a way to get around having to drive so far.

I just remembered that I saw a PT when I was in the hospital for my first IVIg. He determined my hip muscles were weak, and gave me muscle-strengthening exercises to do. This just seems non-sensical to me. If I do the exercises, I'll just wear out the muscles and then they won't be there for, you know, walking into the next room. So someone would have to explain to me exactly what I could hope to gain from PT. The problem is not that the muscles themselves are weak; the problem is that the signal from the nerves is blocked, right? If I were a body-builder, and came down with MG overnight, I'd feel just as weak.

Abby

[4-eyes]

I have to agree with you, Abby, that it's a NMJ thing, not a weak muscle thing---and I'm a therapist. When I had the reboot, and to a lesser degree when I had my two "mini-remissions" I would wake up and the muscles would just be "good to go." Sure I would say I was "out of shape" but not unlike anyone else who'd ignored their exercise program for a period of time. It isn't weakness like someone who has had a stroke and is working to rewire neurologic connections, or someone post-immobilization from a cast or other device. If you are able to exercise on a daily basis, more power to you, and you should be doing that within your ability.

Now what I could see as far as therapy usefulness goes, are instructions in proper body mechanics, functional transfers, gait, use of assistive devices, home modifications and energy conservation instructions. All of that could help you make the most of the energy and strength you do have. That would best be done in a home visit, so the therapist can actually see your environment and learn what you are and are not willing to do/use.

Hope this helps.

[AnnieB3]

Abby, It's not accurate to equate PT to exercise. What a good physical therapist does is to evaluate any issues you may have physically, like any tender points that could lead to more weakness, give therapies that are useful like ultrasound or massage and, yes, give exercises if they are useful.

There have been many times when I get a particular muscle group that "knots up" and if I don't massage it out, it not only keeps getting worse but then strains the other muscles around it. It's a vicious cycle.

So think of PT as alleviating muscle issues due to MG and not as causing more. I'm lucky my neuro has PT in his office. They get NM diseases and know how to work with them. It makes a huge difference in the quality of my life.

Feel around on your hips and back for any tender areas. Find any? That alone would be reason enough for PT.


Annie

[Tracy9]

Exercise, PT, muscle strengthening are critical for us. The reason is that we can strengthen our muscles so that they are stronger to begin with and that can help compensate for the MG weakness. We can do more with less if our muscles are stronger.

I've had PT come to my home many times. They have given me exercises that are simple but always muscle strengthening. They involve using stretchy bands, lifting soup cans in a variety of ways to strengthen my arms, etc. The weaker we are and the less we move about, the more muscle strength and tone we lose. We absolutely need to preserve and maximize our muscle strength through exercise.

I swam all summer long and it was great. My muscles were so much stronger. I haven't been doing much since summer. I really need to get a program. Plus exercise is critical to our health anyway.

I know I can't always exercise but even when I was just in the hospital in crisis I was shown exercises to do right in my bed to strengthen my muscles. They were very helpful.

There isn't much we have control over but this is one thing we do. We have to keep our bodies tuned and our muscles as strong as possible.

[Interested]

Originally Posted by pingpongman

Had my regular neuro visit today. Thank the good Lord for my wife 2 doctors missed my low level of Vit D. After she pointed that out he said to take 2000mg of D3 and reduced my Prednisone 2 1/2mg for 6 weeks. He said for me to call him if my legs or breathing got worse and we would IVIG again. I'm doing ok but could tell I had gone down hill a bit.
Mike

Pingpongman, My forty year old son was diagnosed MG in October, 2012 via eye muscle tests, blood tests, and a CT. In December he had a thymectomy and had a thymoma removed. He does not need chemo or radiation, but needs to get a CT every six months. He is now on 60 mg of Mestinon three times daily, and 20 mg of Prednisone twice daily. The neurologist said he would probably have to adjust his dosage when he goes to back to see him the end of this week.

His ptosis and double vision have subsided. However, he now has problems chewing and weakness in his arms and legs. He also notices that he feels like he doesn't have enough air when he tries to sing and can't whistle. I know the neuro doc is still trying to find the proper doses of medicine, but I have read that IVIG helps many to get their MG under control and noticed you said that you would IVIG again. I am wondering if he should mention this to his neurologist.

[pingpongman]

I am better now. I was going through withdrawal of my prednisone. I have been on it for a long time and when you start reducing at the 20mg level it gets tough. Reducing 2 1/2mg doesn't sound like much but believe me it is. It really depends on how much and how long you are on it.

It took us 2 1/2 years to find the meds that work for me. It is all trial and error. As for IVIG I'm pretty sure it never did much for me. One time I had 24 treatments over an 8 week period and nothing happened. That said we are ALL different and react differently. Some neuros like to hold IVIG in reserve for crisis situations. My neuros didn't have that attitude. It is definitely worth a shot. I wish you the best in your journey.
Mike