Going to see my neurologist, on my mind was questions of whether to stay on Ocrevus. I felt if I was still declining so much why be on a drug that can come with some serious side effects. Was the pros still out weighing the cons. I had two other drugs in mind Siponimod and Ibudilast. Both drugs are coming out for secondary progressive. My neuro shot down Siponimod because I was on Gilyenia and it is very similar to…
It is tough. I go to the doctor and my neurological tests aren’t so bad from my last visit. My timed walking was increased by only 2 seconds. No big deal. My range of motion was pretty much the same range as it was last visit. My MRI shows no activity. Yet I’m worse. Everyone who is involved in my daily life knows I’m worse. It’s frustrating. It’s not like my doctor doesn’t believe me. It’s not like my doctor…
I have an appointment tomorrow morning in NYC with my MS specialist. I’m coming off a 3 day round of steroids to see if it was at all possible I could be having some type of relapse. I personally didn’t believe that’s what was happening, however I believe steroids can you give me a little bump up in the energy. My thought going into tomorrow is if I’m still deteriorating so much, why am I taking such a heavy duty…
I’m Jamie. I was diagnosed with Multiple Sclerosis in 1998. I have been lucky that I’ve been able to be on my feet for many years but my time to be in the wheelchair is here. I have been a single mom since my daughter was 7. She was born with a progressive hearing loss. She received bilateral cochlear implants. I dedicated most of my years to getting her the help she needed in school both academically and socially. My…
The infusion was slightly painful last night. Painful in the vein not the site of the stint. It made for an uncomfortable hour. That doesn’t make me happy going into tonight. However I have one more infusion to go. No matter how much it hurts I will get it done. Hopefully the vein doesn’t collapse because that would suck. I slept much better yesterday although I was up every two hours to use the bathroom. There is a tricks to…
Well unfortunately the nurse didn’t get here until after 6pm. I had a heating pad on my arm from 3 on because they said they’d be back by then. I get things happen but why can’t you have the common curtesy to call and let someone know. I ended up burning myself I didn’t feel anything. This morning the marks didn’t go away. It didn’t even help the stuck me twice and the veins didn’t hold. The third stick in…
I woke up early on Saturday morning. I decided to use one of my Zumba cds and exercise in my chair. I use to to stand for the entire work out. Then I’d sit for every other song. It became I’d push through standing for three songs in the beginning and sitting for the rest. Now I barely stand for one song. Yet I still do it and for that I’m proud. I knew it would take me at least…
I’ve shared many blogs explaining how things were getting harder for me. My physical therapist, whom I been seeing for over two years, made a recommendation that maybe it’s time to try steroids. He is also notice the difference. His thinking was maybe, just maybe, this is actually some flareup of a MS. Maybe a course of steroids would take down any inflammation and give me back a little bit of my strength. Since I saw my neurologist less than…
I’m Jamie. I was diagnosed with Multiple Sclerosis in 1998. I have been lucky that I’ve been able to be on my feet for many years but my time to be in the wheelchair is here. I have been a single mom since my daughter was 7. She was born with a progressive hearing loss. She received bilateral cochlear implants. I dedicated most of my years to getting her the help she needed in school both academically and socially. My…
I had a condo board meeting yesterday. I love where I live but the condo needs a lot of work. I know they are looking for solutions from the homeowners of how to get that work done. I think that they should combine our assessment loans take out additional funds and just do what needs to get done and stop piecing together each project. However, technically I’m a renter. My mom and step dad pay the maintenance fees so I…
