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My Introduction
Hi, my name is John and I am 74 years old. I have had CIDP over 20 years and was diagnosed with multiple myeloma two years ago. I have recently had a srem cell transplant which along with my CIDP has left me with weakness in my legs. I am struggling to walk and would welcome any advice on how to improve my ability to walk unaided.
Comments
Hi John,
Apologies for not replying sooner, I'm still getting used to the new format of the forum. I'm one of the online community champions and had a stem cell transplant in 2013 for ALL.
Have things improved with your weakness in your legs at all since you posted? It was something I suffered with after my transplant too and is probably common between patients. If like me, you spent a long time in bed, it's amazing how quickly you lose the strength in your leg muscles. I read a statistic somewhere about the percentage of strength you lose per day in bed but can't recall what it was. When I first came out of hospital I was unable to stand for long and had to crawl up stairs on my hands and knees as I couldn't possibly walk up them.
The time it takes will depend on your overall recovery I guess. In my case I suffered with sickness and GvHD after my transplant. I wasn't able to eat properly due to the sickness so I struggled to get sufficient nutrition to beuild up any energy. This meant it took a long time to regain any strength. It wasn't until I was put on steroids to treat the GvHD that I finally got some appetite back and was able to eat enough to start to regain weight and in turn build up some muscle in my legs again. It was still a long time afterwards that I got close to regaining my original strength, probably a few months, but it did come back very gradually.
I hope this helps and that others might give you some insight into their experiences.
All the best,
Steve
Hi John
Is it muscle weakness or skin/joint fibrosity?
Welcome! By the way ...
Looking forward to sharing.
I had my sct 2021 june. Nowhave cgvhd.
Hope you're stable .
Helen