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Observations and Questions after loading doses
Okay, so I just had my 4th loading dose last week. A couple of observations based on differences in aqua therapy sessions. So, the slide board lateral transfer has been somewhat easier since after loading dose 3 and before loading dose 4. Typically, this would require some assistance from my therapists to kind of help slide me along. After my 3rd loading dose, this was vastly improved and after my 4th loading dose, I did the transfer 100% unassisted. My PT just stood there and made sure I didn’t need any help.
Second observation. And I realize everyone’s actual mileage may vary. But in the aqua therapy sessions, originally started in October 2016, I walk some with the assistance of a rail across the pool. I kind of walk and “pull” myself a little with the top rail. After my third loading dose,but before my 4th, I was able to walk with just the middle support rail as a guide, not pulling me along. I still did that a little, but over half of the trip across the pool was with the lower rail – guiding like when I was walking on land and trailing my hand along the wall or furniture before I started using a cane and then crutches.
However, after my 4th dose last week on Wednesday, I was laying in bed Thursday night and had a noticeable tingling sensation in my quads. It wasn’t painful, and there were no spasms, but just a tingling, like they were active or “nervous energy” type of deal. In my weekly pool session last Friday, I took over 10 steps without the rail at all. I was very surprised by this, as was my therapist. I look forward to trying to repeat this again this coming Friday.
But that leads to my question: has anyone else, whether loading dose or maintenance phase, observed any kind of tingling sensation? This has me very curious. I asked my FAM from Biogen about it and she said she had not heard from other patients, but I also am in the first group of 5 adults in Maryland undergoing treatment. Others have since started as recently as last week, so my FAM suggested that I seek others as the children on Spinraza may not articulate this in such a way.
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5 Replies
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Very cool that you’re seeing noticeable improvements. I didn’t start therapy until post Spinraza, so it’s fun to see the changes you notice from before to after. Can you tell that if you work out one day you’re fatigued the next or is it pretty consistent?
As far as a tingling sensation I can’t speak to that, however I definitely “feel” my muscles more. I’m not sure how to describe it. Like if I do a lot one day my muscles can be a little sore the next. For me that didn’t happen before. A few times I had a warm rush down my leg too. Not sure if that would be similar to what you’re describing or not. I’ve had some minor cramping in my calves as well.
I have heard of a few people describe a tingling sensation though. Maybe muscles waking up? One can hope, right?
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Thanks DeAnn. Good to know others have mentioned the tingling sensation.
So, today, another PT session. I do weekly pool sessions on Fridays and bi-monthly land sessions every other Tuesday. Same place, but different therapists. They work well together in moving me in a positive direction. My PT today was looking at my right thigh (which, since I was a kid, my right arm and leg are bigger muscle mass wise than my left) and said it looked more pronounced. He then described and named the 4 muscle groups in the quad. He said he’s noticed what appears to be more muscle density in 3 of the 4 muscles over the last month. The remaining one, along the outer leg (maybe kind of between the front of the quad and the hamstring?) has not changed.
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Interesting. I’m assuming you’re right side dominant? It’s nice when an outside observer like a therapist can notice a difference.
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Yes, right side dominant. The size seemed more pronounced after diagnosis and I always assumed it was because I used the right side more. Not Rafa Nadal type difference between his huge left bicep and “normal” sized right bicep, but just a bit bigger. 🙂
Agreed re: an outside observer. Although I try to be realistic as much as possible, I don’t want to be fooled by any kind of wishful thinking.
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It’s hard not to fall into the wishful thinking trap. I’m second guessing my progress all the time. I have an assessment coming up, so the proof will be in the pudding as they say. I’ll have to look up where that saying comes from because it makes no sense to me.
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