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If you’ve had physical therapy, raise your hand!
I’m interested to know , if you’ve had physical therapy associated with your LEMS, how it went for you.
I have two instances, and I’ll relate the first one in this post, the one pre-diagnosis.
Reporting ongoing weakness in my hips, I asked my Primary doctor for some PT. She’s a good one and was happy to order it up for me. I had six weeks at the in-facility physical therapy clinic in the VA Dallas. I got a really nice guy who did an evaluation on the first visit, then put a program together for me in the next couple of sessions. Twice a week I reported to the clinic and did the exercises and stretches they wanted. He also gave me a few home exercises for my hips as well. It all went well, except the home hip exercises seemed to agitate my hips, more than help. Odd. Finally, after 6 weeks was up, my trainer did a post evaluation. I was very specific in getting details from him right then, on what he found. It was an eye opener and definite red flag when he told me some muscles strengthened, while some muscles did not respond to training. Wow. This was the start on a relatively quick diagnosis of LEMS, after many years of mysterious weakness.
Please tell me your experience with PT! -
2 Replies
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I had PT pre-diagnosis also. I had seen many doctors trying to figure out what was wrong with me. One orthopedic doctor first sent me for epidurals which did nothing and then for PT. The only benefit of the PT was that I got tips on how to deal with my problems. For example, getting a chair in the shower since I couldn’t stand up for more than 2 minutes. Or convincing me that it was okay to use a cane, then a walker, and finally a rollator. (I don’t use any of these anymore thanks to Ruzurgi.)After almost 3 months with no progress, they fired me! The doctor who finally diagnosed my LEMS laughed when I told him about the PT.
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Now that’s a story, @anngailn! LEMS is so rare it’s just a mystery to many I’ve concluded. Glad you got your diagnosis. 8 years before my diagnosis, I couldn’t walk for a time and was sent home with aids, including shower chair, walker, and wheelchair. Also a loop sling to pull my legs up into bed. Yes, it was that bad. I recovered.
Some of those aids do help!
So happy you and I don’t need them now!
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