A quick update for those who have been asking. Sorry for the delay!
Being home for my birthday and Christmas was definitely a blessing! Thanks to everyone who did so much to make my birthday memorable and amazing! I have never felt so loved.
Since getting out of the hospital, I've been doing physical therapy three times a week. I'm getting better and stronger every day. My muscle strength is getting closer to normal, but the muscles still don't quite coordinate together, which makes balancing and walking motions a challenge. Also, my knees periodically like to give out on me. When I left rehab, they fitted me with some knee braces that really help stabilize my legs. They make my legs look like they have artificial powers...like iron man or something!! I am hoping I will be ready to go back to work in February, but at this point I honestly can't say. I am still working really hard to regain my ability to walk. I have a wheelchair, a walker, and crutches, but the only thing I can safely use myself is the wheelchair. Not that I couldn't do my job from a wheelchair, but I really need to keep up with my physical therapy because walking again is reachable if I continue progressing the way I have been. As for how I'm feeling, it definitely is great to be at home. Just the chance to see my family every day, to open the door and breathe fresh air, to sit on the floor and stretch whenever I want to...it's been amazing! Adapting to being at home was harder than I was expecting. I was really overwhelmed in the first several days, just trying to get around and do simple things, but that is getting better. Stupidly, I have had the flu three different times since leaving the hospital on December 8th. How is that even possible!? My body is still really struggling with immune response. Hoping that gets better because being sick so often isn't a good way to return to work, so we'll see how things go in the next month.
As for diagnosis, I have been undiagnosed with MS, then re-diagnosed, then undiagnosed. Haha. Nobody knows. In collecting all my medical records, I have the chance to read doctors notes and updates. Three of them have specifically written notes about this being "an extremely complicated case." I had one doctor tell me I am a "zebra in the zoo" and one doctor tell me i am a "duck that doesn't look like a duck or quack like a duck." To make things more complex, it actually is looking like a possibility that I have Myasthenia Gravis...mostly because I tested positive for it! But that doesn't explain the lesion in my head or the MS-related proteins in my spinal fluid. So it's actually possible I have both or that the MG tests are false positive for some reason. Who knows! I am trying to not worry about any of this for now because it is a circus that makes me feel like a mental patient at times!!
As for follow up, a really great friend referred me to one of the head neurosurgeons at Barrow's Neurological (thanks again Vanie!) We all knew he wouldn't be able to treat me long term since he is a surgeon, but his personal referral gives me priority status for getting into any other Barrow's neurologist. He made the referral and I am going to see a Barrow's neurologist in February (regular wait time was until June!!) So I am just going to focus on rehab until then and hopefully this doc can help me make a plan for long term follow up. I did get a referral to a great PCP who supposedly helps coordinate specialists and tests when it comes to complicated cases. We are going to have him order my next MRI and some of the labs we know the Barrow's doc will want to see. Hopefully that way we can make the most of our appointment in February.
Oh, and another important update....i have achieved a new favorite status with my nieces and nephews. Haha. They absolutely love sitting on my lap for rides in my wheelchair, or pushing me. I often have two of them riding with me a time because they can't wait for a turn. I absolutely love it! Sweet Garner (7 years) interrogates me about my physical therapy every time I see him. I'm amazed at how much he understands and the specific questions he asks. It's so sweet. Micaela and Steve have both reported overhearing their kids playing doctor. Parker (5 yrs) said to Aisley (2 yrs) "Ok, I'm the doctor. You are in a wheelchair, but you're getting better and you're learning to walk." Hahah....I love it. These little kids are so precious! It's amazing the love and support you can feel from such young ones.
Thanks to everyone for your thoughts and prayers, it really has meant the world to me. I couldn't have made it this far without such great friends and family.
Lots of love,
Mandy
Mandy,
ReplyDeleteI don't know if you know, but my mother has MS and was diagnosed around 28 (my age now!). I was 6 at the time. I have to say from my personal experience of knowing her, that even with a diagnosis such as this anything is still possible. She had her off days, and we laughed about them...still do occasionally. But she has never let her slow her down. She had an episode when I was 7 or 8 that hospitalized her and it took some recovery time, but since then she's been able to figure out what triggers things and can avoid any major complications or increased symptoms... in fact I don't think most people know she has MS. She is now on a self injected medicine (weekly) that helps a lot. Hopefully you get a "for sure" diagnosis soon, but in the mean time keep up the great attitude!
Lots of Love,
Ann Maas