Tuesday, August 17, 2010

Yes, I'm still alive and doing fine

I looked at the date of my last post and realized it's been longer than I thought since my last post. Well Stanford is starting their trial and nothing has happened as far as my case is concerned. Dr. Dake has passed my images around the CCSVI community, and everyone thinks it's a pretty benign thing what is going on in my sub clavean; coupled with the fact that I had good flow there on the venogram. So I'm probably not taking any interventional type steps for quite some time unless I really start going downhill.

My knee still hurts like crazy, but I'm going to physical therapy and we think we can strengthen it and help in that. My only thing I'm going to talk about is Ampyra. I took myself off of it after six weeks. I do think that it helps a little with spasticity, but it wasn't that noticeable. I did it for a couple of weeks longer than people who swear by it say you need for it to 'kick in'. The main reason I stopped is the aggravation it did to my constipation (I'm a poet and didn't even know it). I swear, every MS drug available causes constipation. From oxybutinin to this Ampyra, and I just wasn't getting that noticeable of results. So I'm off of that and am still doing just fine.

I'm handling a great deal of stress at work and have even worked a few ten hour days where I had to be on my feet when it was blisteringly hot and humid out. I did go down in function, BUT I was sweating profusely (a good thing) and my radiator was working well as I managed to hang all day. These things are great tests of what the procedure has done for me. I couldn't hang standing in the factory when it was 50 degrees out before all of this, let alone a heat index over 100. Not only did I hang all day, I did it for three days. So what I'm still dealing with is just 'having MS'. I seem to say every post that "I'm still walking and working". Well the different 'shades of gray' that have been really all I describe are starting to just seem like the ups and downs of life. I mean my CNS has been damaged. I can't say with any kind of definity (I hope that's a word!) that I'm progressing or not. All I know is that when I look back, I seem to be doing very well compared to where I was at before this procedure. And frankly, wasn't that the whole point?

So I'm at work and have to keep this brief as my break is about over. I'll post more, but I wanted you all to hear MY take on Ampyra and also to let you know that my postings seem to be more spread out because life is getting in the way. That could be the most positive statement about CCSVI and the procedure I've ever made.


  1. Great Lew. I don't think I could spend one day working in 100 degree heat and I don't have MS. Happy to read that you are living life.

  2. Loobie,
    I would like to share my right knee story with you. I'm 64 yo. with one kidney. Recently I started taking Herbal diuretic (DIN02245238)manufactured by Natures Harmony (9.45$ for 100 tablets)for water retention. I immediately felt the healing process kick in all over. Then for one week, I could not get a good night sleep because my right leg was hurting and twisting from the ankle up. I had broken that ankle in '99 and still have screws and backets in place. Then an old scarr appeared just below the knee cap. This was the result of an injury incured when I was 5 yo which I had completely forgotten about. The scar disappeared and so did all pains. Uric acid...Yield to your pain, you are getting better.

  3. Gaigenaire,
    I hope you are right! Sometimes I have no choice buy to yield to it! Great to hear though, thank you.


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