I finally decided to get my hair colored! Feels good to recognize myself again!
Since last month’s update a few things have changed….I became more tired and spent 12 hours a day in bed. I also had more periods of vertigo and not being able to drive….so I haven’t been as active as I should be. I also spent half of the month away from home while I stayed with my best girlfriend so now that I’m home I’ll make an effort to get back to the gym now. I have still been having awful joint pain, and my finger and toenails breaking and splitting. My hands and feet cold at times which actually is handy at night when the rest of me is hot….but my hot flashes have stopped! I’m hoping they don’t return for awhile. The other women in my summer HSCT group have also reported that theirs have stopped too.
I still have clicking in my ears from the eustachian tube issue and it’s annoying but it’s very very slowly improving. I’m just going to hope it continues to slowly improve. I believe it’s due to the cold I had that lasted several months. It’s strange dealing with “normal people” colds….when I had (active) MS I rarely caught anything since my body was so busy attacking itself. I had never had a sinus infection in my life so that was all new to me. My memory is still a problem which is kind of frustrating but at least I entertain myself finding stuff in weird places, etc. Gotta laugh.
I went to Northwestern last month for my 6 month checkup. This involved an MRI of my cervical spine and my brain (on the same exact machine each time!), blood draw, and visits with the consulting neurologist Dr. Balabanov and with Dr. Burt the study physician.
I had never met Dr. Balabanov before as I wasn’t required to see him prior to transplant so I wasn’t expecting to see him this time….but I was told he had an opening that they wanted to fill. He estimated my EDSS score is now 2.5 which is down 2 points from before transplant! He said this is typical. Amazing…the goal of HSCT is to STOP the progression of the disease….improvement of disability is a bonus. I was able to walk in a straight line for the first time in years, and I can hop on one foot! I don’t know why, but some of us MS folks are unable to do this…probably related to balance, etc. But I can suddenly do it now.
Next I went to see Dr. Burt last month for my 6 month check up. He showed me my MRI results which indicate NO NEW LESIONS!!!! This indicates remission. I’m very grateful.
My blood work showed thyroid issues so I followed up with an integrative medicine doc who I saw yesterday and was diagnosed as hypothyroid. I’m not surprised, I’m actually relieved to finally have this diagnosis as my thyroid has been weird for years but was never “bad enough” to be treated. It was always a “we’ll watch it….” and now finally more than watching. Treating. He prescribed Nature-throid and also set me up with a compounding pharmacy for a bioidentical hormone to address the menopause. I’ll go back to get more labs in a month and we’ll work to get my levels to where they need to be.
This is a difficult “roller coaster” of recovery but I am slowly improving. I am having difficulty focusing so I decided to this semester off of school as well. I’m hoping to work again in a few months and will resume my studies when I’m able. For now, I’m focused on my health and recovery.
Thank you to friends and family for your support!