Thursday, May 21, 2009


Ups and downs are one of the main characteristics of my MS. I’ve been feeling good the last while, no particular reason other than I guess I’m on an up rather than the down that I found myself on a few weeks ago. Some of my balance issues have gotten much better again and I’ve been feeling stronger. Just as it’s always been, I have good days and I have bad days, fortunately I’ve had more good days recently.
I’ve stopped acting so lazy with my exercises so there’s some renewed energy there. I’m not going to my athletic therapy anymore so for my last session I had my therapist do an in home consult. What I wanted to do is incorporate my rehab exercises together with my workout so I’d get a lot more done and not be able to avoid the rehab side. By coming to my home she could see what equipment I have to understand what kind of routines she can develop. Now I have things simplified to three different workouts that take care of my strength building and rehabilitation exercises together in less than an hour with many variations so I don’t get bored. This will force me to work out at least three times a week but I can do more if I’m feeling up to it. I used to work out four times per week but didn’t always get the fourth day in and often missed or avoided my rehab exercises so I think this new system will work well.
The largest problem that I’m currently dealing with is my eyes. They are very sore and my left has improved in the last 10 days but prior to that my vision was completely blurred. I have an appointment with a new ophthalmologist tomorrow so hopefully he’ll be able to bring something new to the table. Since this problem seems to fluctuate between good and bad days, I’m more prone to attribute my eye difficulties to multiple sclerosis. I never had an issue with my eyes until I lost the vision in my left due to optic neuritis resulting from an attack I had in 2006. My left eye has never fully recovered but has become increasingly troublesome since January and my frustration with my ophthalmologist has been his unwillingness to consider alternative causes such as inflammation around my optic nerve. I have no idea what might be wrong but different reasons for the problem need to be considered. If it is resulting from MS then there is probably nothing that can be done but it’s always worth while examining different options.
I had an appointment with my neurologist today for the first time since coming back from China. Of course his first question was whether I thought it was successful to which I answered the same as I have in my last few blogs which is that I feel better today than before I went to China. He was not surprised that I continue to experience many MS difficulties but he was very happy with my condition and agreed that I was much better than the last time I saw him. The spasticity in my legs was less severe and I was much stronger, he was pleased that I’ve been working out. He took notes on everything I could recall from my treatments in China but wasn’t too sure where to go from here. I knew that the outcome of this appointment would be the same as always; there are no known treatments that he can recommend so the question comes back to me, what do I want to do? I could go back to any of the disease modifying drugs probably Tysabri or simply do nothing. No one really knows if I will be subject to another attack, whether the disease will remain stable or if further progression is inevitable. I decided that it’s best to continue on my current path of self help and monitor what happens from here.
One of the questions I had for him was whether a new MRI would show anything happening with my optic nerve so we could possibly find a reason behind my eye problems. This is a possibility and he agreed that I should have a new MRI to at least compare the status of my brain now to before the stem cell transplants. A new scan would also establish a new baseline for future assessments so I’m very glad that he’s taking a keen interest in the results of stem cell therapy. I also gave him the requested tests that Beike would like to run for their follow up, he wasn’t sure if we could get everything they were asking for but he’ll send a requisition to the lab. Hopefully the Chinese will be able to learn something from this follow up effort.
It’s comforting to realize that my status hasn’t really changed and that I am stable. The up and down nature of this disease is very familiar to me by now and I shouldn’t have been surprised by my recent down experience. What I had reinforced in my mind today is that nobody knows what will happen with my disease or what could possibly happen with stem cell transplants. At this stage everything is an unknown so I just take it as it comes, stay positive and keep praying.

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