Friday, November 27, 2009

And the hits just keep on coming

I guess it's been about a week since my last post. I was scared as hell to actually post that one as you could surmise from my reluctance to do so. I'm not superstitious, but as I've said before, let's cover all the 'hexing' things be they praying or voodoo since doing this in the first place was somewhat of a leap of faith. So I've had another really, really good week. The only bad thing I had happen was that I had one day where I went to work on a day I knew would be high stress with literally an hour and a half of sleep the night before. Preceding this treatment, that would have screwed me up for days. After going to bed that night, I felt absolutely awesome the next day. Recovery time from overdoing it that fast? Not before my surgery.

Since I am now talking about things I would normally have been reluctant to talk about that have changed for the better, I want to talk about one of my two biggies. Dizziness. To a non MS'er who hasn't experienced this, it may sound pretty benign. I remember spinning in circles as a kid just to GET dizzy! And as an adult playing in my friend's annual "beer olympics" (I won't go into details) doing that chug a beer and put your forehead on a ball bat, spin around three times and then run! We actually got many laughs from that event watching people wipe out the woodpile, fall into the pool and generally look like they'd just been shot. But to be almost 24/7 dizzy for the last 3 or 4 years? The word funny isn't even on the map. I used to eat with my eyes closed because I was always just eating to not waste away as I was hardly ever hungry anytime but in the morning before things got stirred up. I still have moments where I run into the wall with one of my shoulders by turning too early (once again, fellow MS'ers know just what I'm talking about), but now I just tell the wall to piss off and move on. It used to be an instant trigger for dizziness. So for a few weeks now, I haven't been dizzy, not even really on the day I worked on an hour and a half of sleep.

I actually even uttered on the forum I frequent ( that if this keeps up, I can almost see myself running again. I can't believe I even uttered those words. After 8 years of MS, that may just be wishful thinking because I know there's damage in me, not just inflammation since I'm progressive, but just to even mention it would decidedly not have happened before. I really don't know if this has stopped my MS or not, and won't for some time. However, I do feel it has, to this point, helped me gain back some lost function. And no it's not just the up and down of RRMS. I'm Secondary progressive. I haven't had a Remittance in symptoms for a loooonnng time.

Another really nice thing is that I don't feel so fragile anymore. I used to feel like I was made of glass. Like to hop down a couple of steps would have just made my knees shatter into a million pieces. I'm feeling more solid, and consequently feel much more stable and balanced and able to stand on both feet with my weight distributed evenly between the two. That feels really "good and strong".

So my next stop is to go to Michigan and get my head examined using MRI-SWI that shows iron build up/deposition. They are doing a study up there (but not taking anyone else at the moment) and I called and offered my head up for exam as someone who has had the procedure done. They wanted to see this as they are just taking "before" pictures right now, and this is a chance to see me freshly after the procedure, and then look at me six months from now to see if the new, good drainage will actually decrease the iron deposition. I sure hope it does as you can't necessarily chelate iron out of your body as it's in every one of your red blood cells. I don't know what the outcome of that may be, but at least we would know if it's getting better or worse over time in terms of excess iron in the brain. It will just provide another piece of, hopefully, valuable data. I decided a while ago that I am a lab rat for sure since I already have been a teaching moment in terms of what can potentially go wrong when you ding the spinal accessory nerve and also what to do if you have what appears to be two jugulars instead of "spider line collateral" veins.

So Happy Thanksgiving everyone. I know what I'm thankful for this year. Being able to engage with my family and friends somewhat boisterously and not worry about getting dizzy for one thing. I mean even laughing and 'getting loud' was all it took to get me dizzy before. But having maybe stopped my progression is another thing to be awesomely thankful for.


  1. Man, I really am grateful for your blog. Being an Mser myself and waiting for a chance to get my veins scanned and opened in Germany, your blog is one of the really cool things I know. The real nice thing about it is that one feels that you are an honest person, so one can trust what you're telling about your stent story. And then it's also funny as hell sometimes - so keep going and a happy thanksgiving to you and your family.

  2. Thanks so much for your continuing reports, Loobie. I'm just screaming with joy for you.

    I'm new to the study of CCSVI but 50 hours research this week are enough for me to know that this is the real deal.

    Now, I am scrambling frantically to get my partner in for treatment. Kate was RR since 1988 but now is progressing rapidly -- every day of delay she is suffering more permanent debilitating damage. I read to the end (beginning) of your blog but don't find where you describe anything about getting the first appointment with Dr. Dake. I found the phone number for Alex, but she's been out for holiday, so I'll call again on Monday. Is there a better way to initiate contact? email? What kind of info do they need from me to get started (I'd like to have everything ready to send when they're back in the office on Monday).

    Thanks again,

  3. Hi,

    I am really glad to have found your blog, and appreciate your effort in putting your feelings/findings on CCSVI into words and sharing that with others.

    My Mum is Secondary Progressive and has been wheelchair bound for a number of years now. One of the most frustrating things (for me anyway) is when I am looking into treatments or new research, the majority seems to focus on R & R stage of MS. It's as if the "experts" are saying to those who are Secondary Progressive, "you are too far gone, we can't do much for you, so we'll focus on those who are in the earlier stages of MS". So finding your blog, with you also being Secondary Progressive, is great. I am printing out as much info on CCSVI, including your blog for my Mum and we are going to look into what we can do for her (we are in the UK btw).

    Anyway, I just wanted to pass on my thanks and best wishes. Keep up the good work, and best of luck for you in the future.

    Many Thanks

  4. I stumbled on to your blog today after being diagnosed last week with RR MS. I just have to say thank you for giving me some hope this week, when all things seemed doom and gloom.

  5. I found your blog through a web search after seeing "CCSVI" posted on my facebook. I am 37 yrs old, diagnosed 7 years ago. Grew up in NW Ohio & now live near Fort Wayne, IN. Reading your blog was like it was my own words. I laughed, I cried, its amazing! Thank you for makeing me feel so "not alone". No one really gets it, till you get MS. If you are on facebook too, please add me! :)

  6. Like Michele, I found your blog while googling CCSVI. My wife was diagnosed two years ago with MS, initially as RR, but after her third attack left basically paralysed from the waste down for many months, they changed her to secondary progressive.
    Luckily she is a stubborn woman, and refused to give in or give up. She is now able to walk almost "normally" and outwardly, appears normal, in many ways reading your blog, reminded me alot of her.

    I am so glad to hear about your progress over the past 4 months after the treatment. It really gives me hope that maybe my wife will be able to have a normal MS free life, while at the same time I am also trying to not get overly excited, and avoid any possible disappointment.

    One such disappointment is that we live in the Caribbean, and all these studies and scans and procedures only seem to be done in the US or some European cities, so it's impossible for us to enrol into the studies. We need to wait for the procedure to become mainstream before we can consider it, and even then it will involve the expense of having to travel overseas to have the scans and surgery ect. (not that the expense will stop us from doing it. Just can't put a price on such things.)

    Anyhow. I have booked marked your Blog, and will continue to follow it with cautious anticipation. I wish you all the best!

  7. Thanks for all the kind words guys. I must say that I don't really think that I'll ever live "MS symptom free" since my status as progressive implies that there are probably neurons that are actually damaged beyond repair. But to just stay where I am at (which means working and a decent amount of walking capacity)? That is the goal. I must admit that I do feel better and feel I keep getting more and more capacity, but I still can also over do it and don't know when it is I'll reach my limit of repair potential. I just wouldn't want any of you all to think that this is going to reverse EVERYTHING. Yes, I do have much more function in my legs than pre procedure, but I still cannot jog and can't walk as far as I want to. I can walk as far as my job needs me to though! Maybe if I'd only had it for a couple of RR relapses, but it's been way past that stage for a while now.

    But I'm still truckin' and will continue to do so God willing!

  8. It's so great that things are going well for you. I am so happy for you! :) Hopefully, it'll just get better and better and you'll be running in no time.

    I know the wall thing, my words usually are, "Fucking wall!". LOL! And just today I was walking around the Christmas tree putting up lights and as slow as I was going, I was tremendously dizzy. I can't imagine that for 3 or 4 years.

    Again, it's so good to hear the positive. Keep'm coming!


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