Saturday, December 19, 2009

Holding pattern again

Well I seem to have platued a bit in my recovery. I haven't been feeling like I've improved any over the past week or so. I don't feel worse, but had been feeling "good progression" for a few weeks there. I have noticed that I have also been feeling the winter blues somewhat. Not in my attitude, but rather in that way that all of us MS'ers know; the cold somewhat locks you up. I've been stiff as a board in the mornings and have been doing a lot of shivering. When I get cold, it's not good. I start shaking like a dog shitting a razorblade and can't stop until I get REALLY warmed up. So the winter is always hard on me as I get stiffened up.

So nothing bad to report, but nothing good either. Me and Randi (fellow stentoneer) went to get MRI-SWI's last week up in Michigan and that was cool, but we didn't get to get imaged in a 3T machine like he wanted to do since we couldn't find the exact model of stents to clear us for stronger imaging. Probably would have been safe, but didn't want to find out the hard way be heating up my stents to about 150 degrees! I have been feeling like some spasticity is creeping back into my left leg, especially around the knee and calf areas. I'm not limping like I was before all of this, but it's starting to feel tight. Now that's not a new symptom, it's not worse than it was (it's still way better than it was) so I'm not panicking or anything like that. It's just that I don't feel as rock solid as I had been. Hopefully that's one of two things; the cold, or the LDN as I've read that it can temporarily crank up spasticity and I've increased to the max. dosage of that stuff here in the last few weeks. Maybe I have to scale back to 3 mg vs. 4.5 mg. That's the way you do it, you scale up to 4.5 mg every night, and peel back to 3 mg if you are having issues.

So I'll give it another week at the 4.5 mg and if it's still there, I'll pull back to 3 mg. But if that doesn't do it, then I don't know what I'm going to do! I was getting quite used to feeling like each week was a little bit better than the previous week. I go through this every winter it seems, so I don't think I can completely discount the effect that the constant cold has on me. I absolutely hate the cold worse than the heat. I remember when I first got MS I was so heat affected that I would stand outside in the snow with a T-shirt on to cool off and get my eyesight to 'come back'. Not anymore! So I'll post again in a week or so and let you all know the rub. Even though this isn't as upbeat of a post as the last few, I can still say with out quesion that I'm firmly on the good side of my new litmus test for this procedure which is this: In the last 8 years I could never say "these last six months were better than the previous six". I can now and still would have a long way to go down to NOT be able to say that. So let's just hope my histrionic ass can get through the winter!


  1. Hi, I love your blog. My bf has MS, dx'd in 2006. He is the same age as you and has the same progressing form of MS. We are interested in pursuing this CSSIV agressively. We will pay whatever we have to and fly wherever we have to for this. Can you give me some Dr. info and names we can contact in regard to this please? My email is Thank you so much. Billie

  2. Leve it to you lew to lable yourself a " histironic ass " I was looking for a term that fit you when speaking with our good Dr. All good old Buddie. Your quite a guy and glad to be your friend. Flat even with no further progession is good. The LDN is quite likely the root cause of your spasticity. I am staying drug and supplement free for now, but have thought about the LDN for the future. We will get there from here. Somtimes i feel like an old buzzerd waiting for a meal, patients my ass I want it now... Cheers from the NW, mark

  3. actually if you could post some or all of the doc contacts on here as a post, that would be so helpful... we all appreciate your posts and i dig the sense of humor. so many of the ms boards are so seemingly uptight and serious... people need to laugh right? 30, male, stuck in cold cold indianapolis...

  4. Lee,

    Are you on Facebook? I'm purposefully not putting information like that on here as I'm not wanting the traffic storm and the 'forum feel' that would give the blog. There is a 'ccsvi in multiple sclerosis' page where all that stuff is housed. Right now, I don't know of any docs that are doing actual interventions except Dr. Simka in Poland as everyone is just imaging and Stanford is gearing up a trial and has stopped surgeries. So I'm not dodging your question, but I purposefully created this only to talk about the effect this has had on Quality of Life.

    Also try and the CCSVI thread on there has 100% of the information you're after and it's all really well organized on "stickys" that always stay on top of the other topics. It's free and all you have to do is take out a username and password. Indy eh?, spent much time at the Indy Sports complex off of 465 playing in Softball tournaments years back.

  5. thank you for the heads up, i wrote a long winded response but it somehow managed to delet itself... for sure on my behalf, but where it went.... who knows. so the shortened version is thanks and ill check the websites out. i understand keeping your blog clean and streamlined to your recovery. which i also appreciate. good luck and im keeping my eye out there to check into this. thanks, lee.

  6. Hi!
    I'm from Poland (male, age 48, 9 yrs SPMS) considering this procedure with Dr. Simka (the lines are getting ever longer).
    I like your approach to the disease and life in general. I's good to read such comments which are so close to my heart from someone across the ocean ;)
    Cheers and all the best in the new 2010 year!
    Jurek Piotrowski

  7. Hi,
    Have you considered taking vitamin D3?
    It may be involved in your winter blues.
    It does improve balance. Studies have shown
    that in seniors who are put on it to study
    reduction in seniors breaking hips that falls
    are also reduced. It does this by improving
    It doesn't end there. There are numerous
    benefits to msers. It dampens down the overreactions of the immune
    If you haven't already you should read up on
    it. Please read at
    and there's much more to read at

    Good luck,
    Sheilah Hendry


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