Friday, February 10, 2017

One Month Post 6 Month Infusion

So, I'm getting a little worried and discouraged. I am trying to maintain a positive attitude, and know that this will take some time. It's hard when you hear stories about others on this drug who have had success with reduced symptoms.  Unfortunately, mine continue to get worse. It's winter in Wisconsin, and luckily, we haven't had really any snow this year. But the cold gets to me. I am deteriorating, and struggle to walk distances without significant effort. I went on a trip to Texas a little over a week ago for work, and walking through the airport was a real struggle. I'm suppose to go on a few more trips in the next few months, and have second thoughts on doing them due to all the walking required. I'm even having issues typing this message, as my right hand no longer wants to cooperate as I type. I don't really care what people think, but I now park almost exclusively in the handicapped spots. I need to use my cane if I'm not inside and can hug the walls. I struggle with stairs, so avoid them. I realize that so many are waiting for this drug to be approved, so I wish that I had stories of how this performs miracles.  For now, for me, it hasn't seemed to do much. I will continue to hope for a turn around, and see the progression of this disease stop. Being patient is really difficult, but it's the only thing that I can do right now. It's been one month since my 2nd infusion, which occurred at 6 months. I really hope to see some good things soon.

7 comments:

  1. Mike,

    These are great charts and graphs! I am a science teacher with MS. So, I mad an excel spreadsheet with my symptoms, also. My major ones are my vision and with overactive bladder. I am sad to say that my neurologist just laughed at me. That was Tecfidera and now they want me to get Ocrevus when it is approved.
    I also have the mentality of not letting this MS win. I am currently on a doctoral adventure to get an EdD and relate it to accessibility.
    Erin

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    1. Thanks! I'm still optimistic, but so far, it hasn't been a miracle that I hoped for. Good luck getting moved over to Ocrelizumab!

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  2. Hello I found your site and I will be following you. My dr wants me to think about this med and mentioned I'm young whatever the hell that means... so I am considering all possibilities at this point to start anew journey with medicine again . I have ms now 10 yrs and seems nothing has been tolerated. Not sure if it is my mindset or what anyway good luck and keep posting I look forward to reading more

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  3. How long did it take for the medicine to start to take effect? My mother just took her first does 2 days ago and goes back in 2 weeks to take her next one. Her ms has gotten progressively worse to where she is basically wheel chair bound

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  4. Hello Mike. I am SPMS now. It wasn't that long ago I was still walking with a cane. As I read your blog, it brings back a lot of memories of my earlier struggles of working, while dealing with a deteriorating condition. I tried everything, in terms of meds, and now will be going on Ocrelizumab. I don't have too many other options at this point. To be succinct, it sucks and affects not just me, it robs from people around me, like my wife & children. Like you, I try to stay positive, but I have in some ways come to understand the reality of the situation. Hang in there, best of luck and good job with the blog!

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