Monday, March 22, 2010


I do believe a fair amount of homeostasis has been achieved in my illness. I say that because I simply feel the same and I really do know what to expect from day to day in terms of how much effort I am going to be able to expend and all kinds of stuff that I've now adapted to since things simply aren't changing that much. My buddy Mitch, who just had this done in Brooklyn, had this to say and it says what the progressive MS'er should expect from this perfectly:

"I feel the same as pre-surgery. If I can keep saying that for the next 40 years, I win."

I know I have pounded this point into the ground. It's as much to temper my expectations as it is to let everyone know that this isn't a panacea for MS. Every case is going to be different, and I personally believe much more will be revealed about the role that fixing this condition will play in recovery. I can't say what role that is because I don't know, but I do know that I pay attention to what people who just learn about this post on the internet and nobody will be able to say I'm a purveyor of anything but realistic expectations.

My legs still hurt and I have walking issues all day every day to varying degrees. But they aren't getting worse. They are just there like if I suffered an injury or something like that; an event if you will rather than a process of constant degrading. I've been exercising every other day now for almost 4 weeks. It's been a real mixed bag I'm sad to say as I had HOPED that I could work a bit and start to feel like some repair has taken place. Well I'm a tail of two halves, my upper half and my lower half.

My upper half is responding very well to working out. As those of you who follow this know, I had a pretty badly damaged spinal accessory nerve and it kept me from working out with my upper body for about 9 months. So I know things are working because I have better range of motion and in the 4 short weeks I've been doing it, I've been able to steadily increase the weight I use. This doesn't seem to be the case with my legs. I work them out with the same intensity as my upper body, but it's not having the same effect. I'm still using the same amount of weight as I was when I started; and the same amount of reps. I just don't seem to be building strength. It could just be that it's going to take longer, but I will report on that in a few months because I don't plan on stopping.

My theory about that is what it has always been. My nerves that control my legs are damaged. They are only capable of carrying so much signal because of that damage. And if you didn't know, if you aren't getting good nerve impulse to the muscle, you can't grow/build the muscles. BUT the whole shitty part of MS is that the signal is constantly worsening and that's why we just lose more and more function and muscle as the disease progresses. So if my nerves aren't constantly degrading, I should be able to maintain my current level of function, and maybe just maybe if I keep it up, I will get some strength back. That will be cool, but I don't need to be setting myself up by actually expecting that. I can still walk enough to work full time and be fairly social. I can't take any sightseeing tours or go to museums (unless of course I want to use a power chair, which I have done and will continue to do when needed) or sporting events, but BFD concerning that.

So even though my muscles in my legs don't seem to be building strength, this whole time of non disease activity has gained me some ability. I can take socks off and on while standing. I can dry my feet off without sitting down, and that's really been nice to feel so stable. It is going to be constant maintenance however for the rest of my life. One thing I have found out is that if I don't exercise my legs, they will get weak very fast. I mean every one's do, but this is a little different! So it is up to me to stay in the shape I'm in and I'm very grateful for that. I'll take that 100 times out of 100 when compared to getting weaker despite exercising; which was what was happening before.

On the other hand, it's awesome that I am able to build strength in my upper body. Waiting for that nerve to heal was a definite trial. For that to be done, ie the nerve is healed, is like winning the lottery. I had really thought in the back of my mind that maybe that wasn't going to heal right and I was going to be a tale of one, low functioning half!

So once again my post is kind of blah and boring as not much has changed. That seems to be a recurring theme and I'll just point to my pal Mitch's quote above. He said in one sentence what it's taken me volumes to articulate! It's been up and down of course (imagine that, just like "normal life") and there are times I get bummed about what I can't do. But to not keep adding to that list is wonderful. So yes I will need to stay on top of my exercise probably forever. But I was doing that in my life anyway. I worked out for 20 years when healthy without straying too far off the routine. So I can do this. I don't have as much energy to do it of course, but if I want to keep myself functioning as highly as I can, I just have to. This is still the best thing I've ever done for my MS and there isn't even anything on the radar as far as what's in second place.

So this post is only to let everyone know that my absence on here as of late is not due to something bad happening, it's just that not much is happening in terms of progression or static improvement. I feel like the improvements I've been feeling as of late are mostly due to the exercise. In other words, the disability I still have doesn't feel like 'active MS' anymore, it just feels like (hopefully) leftover damage. So hopefully I just keep boring you all to tears. Bad for laypeople reading this, but great news for anyone with MS!


  1. Lew,

    I'm still praying that you will be able to build up to a certain point that will be at least a little rewarding. A little at a time is better then nothing at all and I know that you are trying very hard to get to that point. You are strong in mind and seem your best to try and stay positive. I wish you well in your endeavors and pray that someday you will begin to see even more progress.


  2. You're playing a winning hand with the cards you were dealt. I salute you for that. I appreciate your gratitude for "simply" staying in a steady state, but consider this about the nature of recovery -- given the severe downward spiral you must have been in, just like an economic recovery, yours might be a U-shaped one instead of a V-shaped one. My best wishes to you.

  3. I was only diagnosed RRMS in June '09, but I'll share this anyway:

    Not too long ago I flew to Greece to receive a stem cell infusion with an Israeli team led by a Dr. Shimon Slavin. I won't go into too much detail, but I have experienced a measure of recovery I was not expecting, and disappointments in other areas.

    I am looking into CCSVI as a next step. Everything I can find about both of these treatments tells me the risks are negligible, while the potential benefits are impressive if questionable.

    I'd like to know if you are considering stem cell therapy, and why or why not?

  4. Soch,
    I am definitely interested in that. I've blogged about it somewhere in here. I think the combo may be what we are looking for. The CCSVI to 'turn of the spigot' and the stem cells to 'mop up the water'. Now that's my own very unscientific thought process, but I hopefully have bought myself some time to wait for stem cell development.

  5. Been checking back here to see how you are doing and was happy to read that you are not progressing. I think I read that patients treated with this procedure who had more progressive MS saw benefits after 18 months. I think you have good things to look forward to, especially with all your hard work.

  6. Thank you for your blog & update on your progress. Have you considered or taken Ampyra? Heard it helped some people (quite dramatically for a few) with nerve conduction issues. Great that you are continuing to exercise your body post CCSVI & hope you improve albeit slowly but surely. My boyfriend has MS and is on the waiting with Dr. Sclafani to have his veins checked. Interesting days for MS patients.

  7. I hate MS so so much


I've figured out how to get everyone to be able to post on here.