Sunday, April 11, 2010

A couple weeks out-still hanging

And I think it's because my old friend dizziness/vertigo slipped back into the picture about a week ago. I'm still feeling good enough to go out and watch live music on a Saturday night until midnight (big stuff for me), but vertigo kind of makes you feel like everything's out of whack. You just want to close your eyes and sit there. It's especially bad for me right now since I have the energy and leg strength to want to do more. It's just that when you're really dizzy, activity makes it worse so you try to 'hang on' and not make yourself dizzy. I mean it takes so little you're even cautious about turning your head too fast. Well my answer to literally everything in the past (especially dizziness) was to "push past it" with physical activity; specifically running. I'd start my jog and I'd get dizzier, but then it would start to abate as the sweat started to pour.

That quit working when I lost my ability to work up enough cardio to even make myself sweat. Not coincidentally, that's when the dizziness really kicked into high gear. So now what do I do? Am I experiencing progression? I don't feel like it, but I can't say no for sure. However, none of this is new stuff. It's just old stuff re-appearing. So what did I do? I tried to run! And I did go about .25 miles doing something that sort of resembled a running stride. It wasn't pretty let me tell you.
Besides the South Park shorts, I probably looked like I was doing the "Thriller" monster dance, but I really don't care. I could do it, keep it up for more than three strides, and it actually did help to abate the dizziness somewhat. It's not 100% gone like it used to when I really could work hard, but maybe, just maybe if I keep it up, I can get to a full mile. .3 is next up. The only thing that really blows about doing stuff like this is that it's not just how strong your legs are that comes into play when you want to start running again when you have MS. It's the leg pain, the foot pain, and everything else that goes on with your legs. If it was simply being weak and not having muscle development, I could push past that. The other stuff at times will make it hard to walk let alone run. So I'm very pleased I could go that far (a whole quarter mile!), but now I really hope in two days my knee won't keep me from continuing. I'd love to be able to make this part of working out. I'll sweat yet this summer from something other than laying in the sun and overheating.

So it's not like the good times just kept on rolling after my last post. I have pretty much stayed right there, but I have to note that the dizziness returning like it has, has got me disappointed and upset. It's not like I can just say "I wonder if my veins re-stenosed?" and just go down to the hospital, get checked and my veins cleaned up. That's the pisser of doing this so early. So glad I did since this all seems to be a process of people starting this, seeing a small number of patients, and then stopping again as they get paranoid since this is not a proven fact yet. Well guess what? Neither are the MS meds. They are far from proven fact in their efficacy as well. Watch this TV special

it's very telling. I mean people will let us pump ourselves full of, let me say it again, UNPROVEN drugs that are toxic, yet they won't let you open an occluded vein? That's just not right in my opinion as they've been ballooning veins that are stenosed for years and it's extrememely safe. Now the stents I have in are not considered so safe, but people are stopping ballooning because of newspaper articles. This pisses me off because when the MS "wonder drug" (eye roll) Tysabri was first put out, it killed a few people. Patients clamored and it was put back on saying that it was done "for compassionate reasons". Well you can do this surgery for that reason too. The one guy in the video doesn't think you should even be checked, but all you have to know is the loose connection with the efficacy of these drugs to know there's not much of a connection there either.

So it's perplexing that I'm getting dizzy again. BUT A) that's not a new symptom, and B) I flippin' ran a little bit and it helped. So once again, I have to note that with secondary progressive MS there is damage. So I may just be stuck in this kind of limbo where I almost really feel solid, but I can work myself up to feeling pretty bad with not much effort; still exhibiting many MS symptoms. That sucks, but man oh man does it beat progression. I can walk and go out and even run (well it looked almost like running) for a little bit. So that has me on the upside of down and the dropped toast is butter side UP today. I've got a lot to be thankful for, and pragmatically, not much to be sour about when you think about where I could be right now had I not had this "unproven and untested and only supported by anecdotal evidence" procedure done (like I give a rat's ass Dr. Freedman). I'm glad he (the skeptic in the video) has my best interest and safety in mind. However, that argument really only holds water on dangerous procedures and drugs. It doesn't hurt to go in and baloon these veins. Just watch the video and you'll see the vascular surgeon talking about the safety. So him being skeptical would not nearly look so smarmy if he said "I totally do not agree that there is any connection to MS, but if you want to balloon your veins, go ahead, it's your dime". Instead he looks like he has an agenda since it's not dangerous to test and balloon and he is cautioning against people doing it, but he'd give you a prescription for a known dangerous drug in a heartbeat. Oh well, he probably thinks he has to save us dumb masses from our uneducated selves!


  1. Great blog, I'm sorry your vertigo has returned, but I'm so hopeful for you that at the very least, progression will be kept at bay. I completely agree with you about the meds!!

  2. Dude! You SO ROCK!! Thanks for sharing. I too want to run again. I was liberated March 30 and had both jugs ballooned and my left got a stent. I find that since the spastcity left my ankles I need to work on my ankle strength as they feel like limp spaghetti sometimes. I don't want to run marathons or anything, I just want the option. Like you I want to make it a part of my workout. Do you think you return of vertigo is like an exacerbation from pushing yourself physically? That use to happen to me all the time when I rehabilitated my legs in 2000. Good luck to you!! Great blog!!

  3. Thank you for doing the procedure. And thank you for doing this blog. My husband has MS (28 now, dx RRMS at 25). The CCSVI discovery and the treatment have given me so much hope. I am so grateful that you are sharing your outcome with all of us. Hearing that to this date you haven't noticed progression is amazing. Congratulations on getting in on the treatment when you did, and on the real results you've experienced. Thank you!!

  4. Lew, I am so glad you ran!!!! Good for you and who cares how far it was, the point is, you ran!!!! I love to read your blogs and see how your doing.
    John and I are still waiting for his LIBERATION from secondary MS. We were so freakin close. Why could'nt that crap have happened AFTER John's proc.
    Anyway, I am so proud of you for pushing on and setting the bar higher and higher for yourself. You ROCK Lew!

  5. Lew, I just love how you write!! I cannot agree with you more about Dr. Freedman!! What a sad man he is, one can only feel sorry for him, or pity him? Anyway, there are awesome doctors out there willing to help us and so we will turn to them. Also we have folks like you who have gone ahead and had treatment and are so willing to be honest and keep us posted on how you are doing. We don't want sugar coated results, we want the truth and that's what you and Ginger and others are doing for us. Thank you and I sincerely hope you do see more good things happen but understand, as you do, that maybe you just won't get worse. That won't be hard to take either. Bev

  6. Great blog, Loobie. I hope the vertigo will disappear soon. It is a pathetic argument of Freedman to want proof of the relation between MS and the CCSVI as first step. After that he is willing to set up further research and after that looking for the best treatments. There is a sense of some hidden agenda.

    I'll say: given the numerous reports of positive experiences after the CCSVI-treatment, there is definitely a relation between the disappearing of several symptoms and the CCSVI treatment. That those people have MS is not relevant.

  7. Great post Lew. We need people like you to give us a follow up.
    In Montreal, the MS Society is offering a Brain Gym course. A couple of years ago, I met a girl who had followed the course and she said, it helped her a lot with vertigo. Ever tried something like this?

    About our friend Dr Freedman, interesting to see the kind of research he is doing. Looks to me that he competes with Dr Zamboni to find a cure but in a very different and more dangerous field. At least when they bring so called experts, it would be interesting that they try to avoid those who have a clear conflict of interest or at least mention it prior to the interview.


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