KidsHappen Posted May 23, 2023 Share Posted May 23, 2023 Ok so I had my neurological collapse in April 2021. The neurologist at the hospital said she had never seen such a bad case and was not sure I would ever walk again. From the hospital I went to rehab and very slowly but steadily started improving. I was happy with that because it was more than I expected. In February of 2022 I fell and broke my L1 vertebrae. I was laid up for about a month and then after that I started slowly regressing again. I had seen my neurologist right before the fall and was scheduled to see him again in October. It turned out that just when my appointment was due I got covid and had to reschedule. My neurologist is very popular and his appointments are usually six months out so I did not get to see him until the middle of May. When I went in he was expecting me to be mostly recovered and to release me from his care. Unfortunately that was not the case. I have am stilling having symptoms that he expected to be completely recovered and others that he expected to be much better than they are and finally some symptoms that I had originally related to other known health issues that now look like they may be related to whatever is going on neurologically. He has scheduled me for a full MRI of my spine (3 hours and 45 minutes) to check and see if the break healed incorrectly and is causing a narrowing of my spine which is putting pressure on the nerves. If that it not the case, he is going to run lab work for inflammation and muscle enzymes to check for AI degenerative muscle disorders like muscular dystrophy. Of course we are hoping for the first and not the later because while I am still disabled I am able to get around and the spine would probably not get any worse while a muscle disorder would be progressive and could eventually reach a point where I can't swallow or breathe. My MRI is next month and if there is something wrong I should get the results pretty quickly. If not then I will have to get labs done and wait until my next appointment with him in October. I have to admit that I am somewhat discouraged. I had made peace with the way things are and now at the very least I may have a few more months of worrying until I get a definitive answer. 27 Quote Link to comment Share on other sites More sharing options...
Kassia Posted May 23, 2023 Share Posted May 23, 2023 Sending hugs. The uncertainty is hard and that's a long wait. Sounds like your neurologist is very thorough, so that's good at least but I'm sorry about all that you're going through. It's perfectly normal to be discouraged. 2 Quote Link to comment Share on other sites More sharing options...
Katy Posted May 23, 2023 Share Posted May 23, 2023 I’m sorry you’re going through that. Quote Link to comment Share on other sites More sharing options...
QueenCat Posted May 24, 2023 Share Posted May 24, 2023 (((kidshappen))) Quote Link to comment Share on other sites More sharing options...
mommyoffive Posted May 24, 2023 Share Posted May 24, 2023 I am so sorry. Quote Link to comment Share on other sites More sharing options...
Anne Posted May 24, 2023 Share Posted May 24, 2023 Oh I’m sorry! Waiting is so hard! Anne Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted May 24, 2023 Share Posted May 24, 2023 very sorry about the wait Quote Link to comment Share on other sites More sharing options...
Halftime Hope Posted May 24, 2023 Share Posted May 24, 2023 Goodness, I'm so sorry! That is hard. 🥲 {{{Kidshappen}}} Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted May 24, 2023 Share Posted May 24, 2023 {{@KidsHappen}} I'm so sorry you are dealing with all of this. Quote Link to comment Share on other sites More sharing options...
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