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Leg Weakness and Mobility Issues

Autoimmune Diseases | Last Active: Jul 7 3:40pm | Replies (58)

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@thisoldewe

Sorry to read your post. These "Mystery illnesses" have a whole different level of concern for you. And we in our modern world expect to find answers: as @celia16 says, there sometimes just aren't.
But we must not be complacent. Well done you, for hunting down various disciplines in trying to sort out this scenario.
The one thing that jumps out is that "really bad cold". Have you had a Covid test. I believe at this point a blood test may be the only way to determine if you have had Covid. Perhaps another manifestation of "long-covid"?
The wonderful thing that you point out is this: "slow, small improvements". Yea, we want those symptoms to be gone, yesterday. But consistent, positive changes in the right direction is pure gold. You may already have found the key to eventually getting back to yourself.
Our own experience with this was my son, when 15, became very ill, a "mystery". At one point was diagnosis with a brain tumour wrapped around the hypothalamus"... with just a few months to live. ..... ! There was no tumour.
The final medical answer was: "we may never know what was wrong. but he is making very small gains. We hope this continues". His recovery took 3 years.
Today he is a tall, handsome 46 year old - and his mom's joy.
I so wish for you the same future. You are to be encouraged to hunt for answers and treatments. If you are in the States, why not go to a Mayo Clinic? Use every possible advantage to find answers.
Remember that for all the amazing advances in our medical 'modern' world, we have discovered so much more that remains to be discovered. Stick with your physio and celebrate each new improvement, no matter how small.
All the best. Let us know how your journey progresses.

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Replies to "Sorry to read your post. These "Mystery illnesses" have a whole different level of concern for..."

Thank you for sharing! I wish I got tested for Covid back then, but I just figured it was a bad cold like usual since they always hit me hard. Yes, I try to keep up with PT, but it leaves me more sore/wiped out after for a couple days after, so it really is a delicate dance with not overdoing it but also trying to build strength back. It's ironic since a workout arguably set this all off, yet I'm working out to try to get better. I can do more reps/exercises than when I first got there, so I suppose it must be doing something, right?
That is amazing your son recovered but wild there was never a proper diagnosis. It truly is scary when the professionals can't even provide an explanation/have no answer. It's really hard for me to see everyone around me live their best life in their 20s and I'm just on the sidelines alone. I am constantly grieving my previous life but trying to tell myself I (hopefully) have 60 years ahead, and it has only been 6 months of this even though it feels like eternity. Time will tell.