Friday, March 26, 2010


It’s been about three weeks since my last blog and there’s been a lot happening. In terms of my health, not so good, I still haven’t stabilized. My walking has really become awkward and deliberate, I still try to walk a little but it is painfully slow. Since this started about three months ago, I have to classify the sustained decline in my functional ability as progression rather than a relapse that I would recover from. It’s more difficult to get around than I can remember in a very long time. If I compare myself to one year ago, it’s night and day. Now that I’ve got the benefit of hindsight, I had great improvement post stem cell treatment. This has changed because the disease has become active again and I can feel things going on now!

It’s actually more than my walking difficulty and sort of weird because I haven’t really experienced these symptoms in the past. One of them being my vertigo issues that I’ve described. I guess I’ve become a little used to it now but I have never experienced a prolonged occurrence like this. Sure on the odd occasion everyone will get a dizzy spell but they go on throughout the entire day for me. I know to stabilize myself before getting up to stand and simple precautions like this have kept me from many falls but again add to the forces that slow me down. The MS clinic thought that there might be some underlying causes to my dizzy spells aside from the MS like low blood pressure. I saw my doctor last week and my BP was 120/80 in both standing and laying down positions, exactly where a completely normal healthy individual should be. If you disregard the disease, I have always been very healthy but unfortunately, it’s impossible to disregard multiple sclerosis.

A new symptom entirely has crept up to cause great displeasure at times, it’s not painful but like many other symptoms annoying and extremely uncomfortable. Strangely enough it has to do with my toes, they are sort of cramping up but only in feeling because they appear normal. If you can imagine a hawk’s talons as he holds onto something he’s swooped down to grab, his grip would be very powerful. This is the feeling I experience primarily in my left foot, as if my toes are curled up and clenching onto something for dear life but they’re not curled up at all! It’s another one of those mind over matter things that I have to try to ignore or else let it drive me crazy. I can try to massage my foot and toes for relief but it is something new that I can’t get rid of by popping a pill. I thought I had experienced some strange sensations before but not like this.

Unfortunately I’m still dealing with all of the same problems that have plagued me forever like my eyes, the constant buzzing and vibrating feelings in my lower body and the severe spasticity in my legs. Actually the increased spasticity in my legs is the largest contributing factor to my walking difficulties. I’ve reverted back to the straight legged walk and many of the improper movements that I learned to correct through my physical therapy. Walking up stairs improperly swinging my hip or leg to the side has almost become the norm again and picking up my feet as I walk is very difficult. I really have to concentrate when I’m outside because this is how I can trip on a small stone. Inside is a different story, I let my feet drag because they slide along the carpet or hardwood floors easy but oddly enough this can cause me to fall too. For instance, if something was spilt on the floor and not cleaned up properly a sticky film will remain. As I come along with my feet sliding and run into the sticky patch, my forward motion is stopped and you guessed it, down I go or very close to.

So because I can feel this progression happening right now, the urgency I feel to have the liberation procedure has grown. There are now several foreign clinics that offer testing and treatment for CCSVI like India, Poland, Bulgaria and the one I have been talking about in Mexico. I would want to check out these programs and doctors very thoroughly but fortunately I was just accepted into the U.S. clinic I spoke about in my last blog. When my MS blogger buddy forwarded the contact info to me I phoned the office right away to get myself on the treatment list. I wasn’t sure that I’d move forward with this treatment facility but figured it can’t hurt to register my name. Well I got a call last Friday from the doctor’s patient coordinator to inform me that I was on the treatment list and they needed to schedule me in or take me off the list. Problem was that I had to confirm my spot in line by Monday or I would lose my place. She was very kind and apologetic about having to pressure me into such an important decision but if I didn’t take the spot there was someone right behind me waiting for it. When I first learned about this doctor I was aware that he was performing the procedure on the quiet which is why I didn’t release any information. Shortly thereafter the doctor’s name was revealed over the internet and almost immediately his office was inundated with phone calls and emails causing a complete halt to new bookings. Because I had secured a spot by calling early I was still offered the treatment but had to make a decision by Tuesday morning. There was a lot to consider because I knew I wouldn’t have any insurance coverage and the additional expense of flying to New York and staying in a hotel for a week would be costly. I was also waiting to hear more information on the treatment facility in Mexico before deciding where to go. It wasn’t until Monday evening that I received enough information on the Mexican clinic to make a decision and in the end I chose to stay with the New York doctor. First thing Tuesday morning I called his office to inform them I was going ahead with the treatment, she asked me when I would like to book the procedure to which I answered “your first available opening”! This happened to be the week of June 7th so I told her to sign me up and now I’m booked to undergo the liberation procedure! All of the details have yet to be worked out but at least I know I have a confirmed date.

I first stated my objective of being tested and treated for CCSVI within six months in my February 4th blog so I’m extremely pleased that I will have achieved that goal in only four months! Praise God, I cannot believe it’s happening so fast. So many pieces of this puzzle came together without effort and planning on my part. The fact that I received the contact info without even asking (thanks Lew), I called to get my name on the list just in time and was able to schedule the treatment whereas many others were put off, the good Lord in His perfect timing has worked out a financial blessing that will enable me to afford the procedure, and although not confirmed yet even my travelling expenses will be provided for! It’s amazing how this is all coming together and to see how God has been working in my life assembling the pieces of the puzzle in His perfect way without causing me any stress or angst. I truly feel blessed!

As was the case with my stem cell transplants, I’m going into this experience without any lofty expectations other than stopping the progression. I hope to see some improvements like a decrease in fatigue or an abatement of my vertigo and other problems that have been troubling me. Notable health improvements have been experienced post procedure but no one can claim they know what to expect. Again, this is in God’s hands but my prayer is that the treatment will successfully halt the progression that I have experienced recently. I will include more details about my treatment as I learn more and get closer to the date. I have followed the experience of two MS bloggers that have undergone the treatment by this New York doctor and while it is too early to assess any results, both men are completely happy that they had the procedure. I have heard nothing but praise for the doctor and his experience and accolades are very impressive. I consider myself extremely fortunate to be in line for the liberation procedure and realize that many MSers will be watching my experience closely but feeling very envious. The good news is that testing and treatment for CCSVI is really gaining traction albeit not very fast in Canada. Of course we all want more research confirming an association with MS but for many of us time is critical and I think that in the short term as the benefits of treatment are documented, the medical establishment will have to open its eyes and get out of the proverbial box. The story really is dynamic and evolving quickly which is why I believe our hope is solid and stronger than ever!


Loobie said...

Leroy, That 24/7 vertigo has been my least favorite symptom that came on after I became SP. I'm happy to report, and I hope the same goes for you, that although I still get dizzy, it's not the 24/7 variety which keeps you from eating and functioning well. Good luck dude! I bet you wish you could hibernate until the 7th!

Kara said...

I am so happy for you. CAnnot wait to hear how it goes.

Megan James said...

I am also very happy for you,thanks for sharing.
Multiple sclerosis and ccsvi