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It sounds like most of the respondents are generally in better health than me—I have chronic respiratory failure from MG and up until 2 months ago was sure to walk with 1 crutch around the outside of my house (with numerous breaks) ~ .2 mi, and go up the stairs 1/d (down does not work safely for me—gravity takes over..I have an elevator in the house).
I get PLEX every other week which keeps me at a baseline I can deal with.
~2mo ago I had severe Back pain (to the extend that when I put weight on my right leg I was suddenly on the ground before noticing the intense pain. After a few week of hellish pain and inability to get an appointment with anyone who could do anything helpful (I did get an MR done showing severe foraminal narrowing with root compression on the right side at L4/5 and L5/S1 with moderate to servers narrowing at L3/4. This is due to a congenital abnormality which is now becoming prominent from age related degenerative changes (I’m 54). I finally went to the ED and they admitted me for evaluation— I got steroid injections into L3/4 and L4/5 which made movement and transferring possible again; however I can no longer walk for more than a few steps with my crutch before the pain become unbearable and my leg starts to shake..I finally saw my neurosurgeon (I’ve had prior neck surgeries) who said there is nothing he could do given my MG and the risk of making things worse.
I’m staying as active as I can and do my PT exercises. I’m managing the pain with advil and gabapetin (Neurotin). I’m really concerned that I won’t be able to walk again.
Is anyone starting/ has started from a functional level like mine? I want to try swimming again, but my pulmonologist. Is against as I’ve had numerous respiratory infections and tend to micro- aspirate and with the heat getting out of a pool may not be feasible.
I’ll keep moving but want to do more