Jason’s MS Blog

After the (second) lumbar …

March 26th, 2009

The second lumbar puncture was even easier than the first. I was a bit nervous waiting for it, but once the valium kicked in, all was good. It was really less traumatic for me than getting a regular IV put in my arm. Again I had to lay flat on my back without lifting my head for 6 hours afterwards, but the first 2 hours were essentially sleeping waiting for the valium to wear off, the next two chatting and having some food (no water or food 2 hours before or after the puncture), and the last two watching Ghostbusters – bit of comic relief. I felt more comfortable with the whole procedure this time. I slept pretty well, no headache, and just a bit of a stiff spine this morning. No problem at all – except for the interesting fact that it is impossible to execute a complete sneeze with a lumbar puncture stiffened spine! But I felt good this morning. Also, every day the weakness from the bone marrow transplant wears off a bit more, so that helped me feel better, too. By the way, the next lumbar puncture is scheduled for Mon. Mar. 30, probably at 2:00 pm again although the date and time are tentative at best at the moment. The next one is a bit different – they will inject the stem cells that they cultured from my bone marrow. That is why the date may change – they have to time it relative to how well the culturing process went. Usually about a week, they say, but it can vary.

But I feel like I am digressing from what I really want to say today and just giving (albeit important) news. I finally have enough energy to blog about some of the other wonderful things that have been going on here and not just the basics of the treatments. The first thing is to mention the effect of the first lumbar puncture. All was uneventful until about 36 hours after (Thursday night last week for me here) when I felt an ache starting from my left buttock and travelling down the outside of my left leg to my foot and ending at my 4th toe. A sort of dull ache, and I could feel the beat of blood flowing. I took no notice of it because I was focussed on the bone marrow transplant that was coming up the next day (Friday), but that night the ache was still there and even stronger than before, strong enough that I had to take an Advil to help me sleep (I figured that given I had just had, essentially, surgery, It would be worthwhile to have a good sleep!) Then the next morning an astonishing thing happened. I was lying in bed (enforced bed rest for 24 hours after the bone marrow transplant) and the vice-head doctor came to see me to check how I was doing. I had not met him before, and I told him about the ache in my leg. I had mentioned it to some of the nurses, my assigned physician, Dr. Hong, and my parents, and we were hopeful that it was a good sign. However, when the vice-head doctor checked the strength in my legs by pressing down on them and asking me to lift them up one at a time my left leg was stronger!!! For anyone that knows my condition, this is astounding as it has always been my right leg that has been stronger!! And the vice-head doctor commented “so your left leg is stronger” – the fact that he had never met me before just adding weight to the astonishment everyone around me, and no one more than myself, was feeling. So something good appears to have happened already as a result of the stem cells! Hooray!!!!

The weakness caused by the bone marrow transplant masked any further awareness of this hopeful sign as my whole body was weak for 3 days and so I couldn’t tell if anything was stronger (in fact I was beginning to wonder if I would ever feel strength in me again!) But I had an interesting insight on Monday that seems to have paved the way for another astonishing gain. The insight was that, after really straining to do my best in my physio workout on Monday morning – you know clenched teeth trying to do sit-ups, etc – my neck really hurt on Monday night to the point that I couldn’t fall asleep for over 2 hours. Or maybe you don’t know in the sense that I realized that I really do push myself waaay too hard and, more importantly, I realized that I compensate for weakness in all other parts of my body by straining my neck and shoulder muscles – literally, it seems, trying to use them to move, say, my legs. This perhaps doesn’t sound like much, but it came as a revelation to me; not only from the physical point of view, but from the emotional/spiritual side of things too where I seem to have somehow been able to release, at least to some extent, my deep-seeded need to push myself beyond my limits all the time! Anyway, the next morning in physio (Tuesday) I talked to my therapist, Tina, and we decided that I need to do the exercises but really focus on not using my neck and shoulder muscles. Things appeared disasterous at first as without the compensation the muscles in my legs, back, abdomen, etc. were revealed to be much weaker than I thought. However, I was less tired after the physio session, and had no pain in my neck that night. This continued yesterday (Wednesday) and this morning, but this morning an amazing thing happened. I was trying to open and close my right leg – move it laterally lying on my back – and it was really difficult. But then somehow, I was able to switch the intention of my brain from moving the leg through using my shoulder and neck to just sending the signal directly to my leg and letting my neck and shoulder muscles relax. And my leg went crazy!! Suddenly I was opening and closing my leg at 3 times the speed, and did about 5 or 6 repetitions where I could barely do 2 slow ones just moments before!!!!! My Mom and Tina were as astonished as I was! Then the same thing happened with the left leg, 1 or 2 slow, laborious movements, and then all of a sudden a switch and 5 or 6 fast ones!!!!! So hope abounds!!! Of course not all my muscles have responded this well, and there is a lot of work to be done for me to retrain myself not to compensate, but something seems to be shifting. We told Dr. Hong about this, and she said Congratulations!

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