I traveled for business last week to Texas. Coincidentally, I had my worst MS week ever. The combination of additional walking, and some personal events that caused significant stress led to a very challenging week. To top it off, I fell twice yesterday. Once at home, and once in the gas station parking lot. My balance has been really off lately, and I never really worried about it too much. However, when I spent my night researching wheelchairs and walkers on Amazon, it gets a little depressing. I need to convince myself that I cannot be a burden on anyone, and that the people who are in my life understand what is involved when dealing with MS. I have to move forward without worrying about anyone who may have abandoned me, and live with my future in mind. I have a couple of months before my next MRI and infusion, but hope that it doesn't continue to get worse as Ocrevus is suppose to be my miracle drug. There is so much buzz after the FDA approval, so I need to stay positive. I need to remind myself that I have been lucky to start this before most people, and it isn't something that is going to be fixed overnight. So, I knew the day would come where I might need a wheelchair or a walker. I just didn't expect it to be so soon. :(
Hi Mike, I hope you are feeling better. I have really enjoyed reading your blog. I hope you are able to keep updating :)
ReplyDeleteHey Mike, Your blog is so helpful I can't thank you enough! Just had my second half dose yesterday and I know results can take quite a while but banking on this being my "magic bullet". Have had ms for 30 years and wasn't until about 3 years ago been in decline .. seems like daily :( But staying optimistic and can't wait for the day your blog says " I'm winning the battle" ha. Better be soon. Ha. I have noticed sugar and gluten hits me almost immediate so starting more plant based no sugar or gluten diet. As for your fatigue, I couldn't put my socks on without adderall. I take 20mg in am and 10mg early afternoon only if I have to. Will mess up your sleep if u take it too late in the day. I also take Tizanidinr cuz muscle weakness and stiffness is awful ( walk like Pinocchio). This is a muscle relaxer but makes you super tired so start in small dose ( 2mg, I take with adderall to start my day). On the mobility issue... I'm with you! Hate being a burden and want my freedom. I got a Travelscoot. Amazing big person tricycle. Ha. Super light, collapses, and fast. Only way u could fly anywhere since every airport in a small city. It looks cool and when I had my sons tennis racket over my shoulder I looked like an athlete in rehab not a gimp:) pricey but so worth it. That's all I got. Know you will turn the corner any day now. Power of positive thinking!! You have the lead in my ms joirney and counting on you :) Here's to taking our life back Mike!!
ReplyDeleteThanks! Still optimistic?!?!
DeleteHi Mike, how are you feeling now? Are you seeing any improvement now that you have had several doses? My wife has had MS for 27 years and is getting her first treatment on July 3, 2017. Has been on tysbari for the last year and betaseron prior to that, uses a walker and has an aide with her during the day, we are hoping this will help her walking some....wishing you the best
ReplyDeleteUnfortunately, it's not the miracle I'd hoped for. I have another infusion coming up, so 'm still hopeful. I will probably need to try something else, as it doesn't seem to be working for me.
DeleteMike, so sorry to hear you don't feel its working as good as you hoped.
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