In the spring of 2010, I had for the 4th year in a row, dizziness, weakness and balance problems, which had been diagnosed previously as “Benign Paroxysmal Positional Vertigo” (BPPV), and treated with rocking head physiotherapy exercises. This would usually go away in about a month, mostly related I believe to me becoming more physically active in the spring, just like a bear coming out of his den as the snow melts. This spring though, it was getting worse as the weeks went by. I would turn white in the face and almost collapse after vacuuming the carpets for 5 min. I would be walking like a cripple and dragging my feet if I tried to cut grass with a lawnmower. I started meandering like a drunk unable to walk in a straight line. I was permanently dizzy unless I was lying down or not moving, had tingling in my feet, weak ankle strength and a feeling like my legs would collapse from underneath me all the time. I was also starting to slur some words, without being able to correct myself and say it properly. I was unable to stand for any length of time and always looking for a chair to sit down. When I was walking it felt like one leg was shorter than the other, resulting in a permanent hobble. I was going into severe depression with a “couldn’t care less” attitude, as I could see my life & future as I knew it, rapidly disappearing in front of my eyes. Based on my observations and complaints of older people, I gave myself an effective physical age rating of at least 85 years old, even though I was still young at heart in my mind and appearance. I was however still optimistic, and hoping I would “snap out” of this as in previous years, but noticed a cyclical trend of feeling worse alternating with better, usually every week, however every time I felt worse, it was even worse than the previous low. I had 4 separate blood tests done; testing for different parameters – all were perfect. Then I had a CT scan which showed a possible cystic area in my brain, followed with an MRI one month later in the beginning of August. The day I received the Fax from the radiologist about my MRI results – lesions consistent with MS, was also the day I took my wife to the airport to see her father for the last time who had rapidly deteriorating terminal liver Cancer, and as I drove back from the airport I had a phone call from my mother that my father had just had a stroke and was flown to hospital by air ambulance.
“…I feel 100% perfect, and wonder – did I really have this condition?”
This was my introduction to MS. The only thing I knew about MS, was that the frail lady that was pushed every morning in a wheelchair by her husband in front of our house, had MS. I was booked in to the MS clinic, with a 3 month wait time for my first appointment, and bypassed this by going to the Emergency department in the hospital and seeing a neurologist who confirmed my MS. I immediately disregarded all doctors advice of “do not read anything you see on the internet, except what is published on MS Society site” and had called numerous private clinics, before I decided and booked myself in, 3 weeks after my diagnosis. Two months after my diagnosis, I was at the clinic to have a balloon angioplasty performed for both my left & right jugular veins (CCSVI) + 2 bone marrow stem cell treatments, one by Lumbar puncture in my spinal fluid, and the other by direct injection into the pulmonary artery, performed during the angioplasty.
Every morning I still walked the 2 Km to the clinic , as I am quite stubborn and did not want to let this “incurable disease” beat me, and I knew the only thing that pulled me out in previous years was keeping active, even though this was very difficult now. I would sit down on a bench in between, and people were probably getting used to seeing “the drunk” walking by every morning. I had overcome my embarrassment of public perception – I didn’t care anymore. I went to the clinic with low expectations, and was hoping for some improvement, or at best just stopping the progression of MS, rather than my alternative of “slowing the progression” as anticipated with Interferon therapies, in addition to all their negative health side effects.
The procedures were surprisingly painless, and performed in a very relaxed, professional, sterile environment. My immediate physical reaction to the lumbar puncture (other than extreme stiffness the next morning, and hardly being able to bend down to put on my socks – it took me 5 min), was a muscle seizure attack in the evening and through the night in the hotel room. Six hours after the lumbar puncture, all the muscles relating to my MS symptoms – torso down to my feet, seized up. This probably happened when the high concentration of stem cells in my spinal fluid reached my brain, and a war of the lesions and stem cells was taking place. The only position I felt comfortable in was lying on my stomach on the bed all night long, and I was afraid to move. Needless to say, the next morning I took a taxi for the first time to the clinic for my angioplasty. The result of the angioplasty procedure, was not immediately evident while I was in the recovery room afterwards, but the next day I was surprisingly full of energy.
Since I had a “free day” before my return flight, I walked for 6 hours! At the end of the 6 hours the collapsing feeling was coming back, however I was still full of unstoppable energy and walking with reasonable coordination. Nobody that saw me walk, would have noticed that anything was wrong with me. I enjoyed this ability to walk so much, I ended up walking up a ramp and then 10 min on the Emergency strip on the freeway, after I had been given wrong directions to get to where I wanted to go. In North America walking on the highway emergency strip would not be unusual, but in Germany this resulted in the police performing a very dangerous task – crossing the median and driving in the opposite direction against the traffic flow on a 4 lane Autobahn with siren screaming (I was just shaking my head and amazed), to pick me up, search all my pockets, and return me promptly to the clinic. I think they initially thought I was a mental patient – it was great German taxi service though, which however I felt I did not need.
A day later when I left Germany, intense headaches and nausea started as my brain was starting to adjust to the new stronger consistent blood flow. I had wandering headaches like I never had before in my life moving from a regular headache, to my sinuses, and then the into the back of my head and moving all around again. I felt uncomfortable except when laying down, and perspired a lot. Then after the 6th day it was suddenly all gone, and my slow recovery started.
Right from the day after the angioplasty until today, my energy has never left me though. After the 1st month, I felt my first short periods during the day where I would not feel any dizziness, and I realized this treatment was really going to work, but I was also amazed to notice that I could still walk erratic even though the dizziness had subsided – obviously unrelated symptoms which I always thought were connected. Then 2 months after the treatment, I had my first periods in a day were I felt I was almost completely “symptom free” – what a feeling!
As I saw my symptoms slowly “melt” away, and as I started to understand how to read my own MRI, I realized that because I have significantly more lesions on my right brain side, this had affected my left body side function much more than the right. This is why I perceived that one leg is shorter than the other when walking. As my general state was so bad, I never previously associated my MS being more pronounced on one side than the other, but this also completely correlated with the vein that had poor & turbulent blood flow on one side, thus also creating more lesions on that same side of the brain, and affecting my symptoms on the opposite side of the body much more severely – the connection that CCSVI is very much related to the formation of lesions, that mainstream medicine still does not want to accept.
I feel now that my right side is 100% back to normal, and I can balance almost perfectly if I stand on just the right leg, but the left side is still lagging behind a little. During this recovery period, I, for the first time, really understood what all the MS symptoms were as they were separating themselves out, with some disappearing intermittently, and then reappearing again. I never understood my individual symptoms before as my “general state” was just deteriorating so fast. However I have to say again, that right from the start after the procedure, nobody that didn’t know I had MS, was able to see that I had anything physically wrong immediately after the treatment as my gait and physical functions improved so significantly.
From my non-medically trained perspective, MS seems to display 2 separate symptoms – those created by the lesions or “Sclerosis” which has been a slower recovery for me, and I believe the stem cells have been very instrumental in their repair process, and those created by sudden improvement of blood flow – a virtually instantaneous improvement of energy the day after. Is it the sudden drop in blood backpressure in the brain, that restores the energy and some functions? If the medical community wants to finally start constructive clinical trials asking the right questions, maybe they will find out.
The diagnostic doctor, who first did the diagnostic testing, determined that I was missing my venous valves in my jugular veins, which accounted for my turbulent poor blood flow that was always going back & forth as seen in the Doppler ultrasound. This was significantly improved with balloon angioplasty in both veins in selected spots. He remarked that every MS patient he has tested had either missing or defective valves, and I assume I have likely had this condition from birth. When I think about my condition right now, and understand some of the smaller MS symptoms that I previously had (how would I know?), I realize that I am probably in my recovery at the level of health that I was a year ago, before I even knew that anything was wrong with me, other than what I considered to be my “normal aging process”.
I am also starting to understand that I probably have had a tendency towards MS all my life, because of my turbulent blood flow created by a lack of venous valves, and this possibly explains a few things to me already from my child hood that seemed normal as I would not have known any different. Does this explain why I had “dizzy scary running in a tunnel” dreams when I was small (I never dreamed later on in my life) as my developing brain was getting used to a not so efficient blood flow at an early stage in my life? Does this explain a total exhaustion and dizziness (similar to MS symptoms) that I would feel after riding my bicycle in my teens after a lengthy ride, and that I would however recover from very quickly in 15-30 min afterwards? I assume I may have likely had undetected lesions in my brain for many years, and because I perceived my health as being normal and was always physically active, was perfectly content with my health.
My biggest hurdle right now is psychological – to not hold myself back because I know I have lesions in my brain that can create lingering symptoms, however mild. I never limited myself before when I did not know about my condition, so why should I now? If I did not know what I know now, I would think of myself as being in perfect health again, and this is why I am assessing myself now, 4 months after the procedure, as being about the same as I was a year ago before I even knew what MS is, or had a health problem.
What has happened to me is really a miracle. I did not take a lot of time to decide or research this procedure performed on me, as my life was spiraling downhill very fast and I felt I needed to act fast. I was very fortunate, in my quickly made decisions, to have decided on the treatment and the clinic, which is uniquely positioned to offer BOTH the stem cell treatment (their primary original treatment business) combined with CCSVI offered by many other facilities. I think MS patients going in for just CCSVI are missing out on something. I have felt reactions to both of these treatments, and now 4 months later, am just about back to normal and am now still recovering from the emotional trauma of seeing my lifestyle fade away and becoming a disability from an “incurable disease”, and getting this all back so quickly and unexpectedly. I can even run now! I still do have weaker days, followed by days where I feel 100% perfect, and wonder – did I really have this condition?
This is just an account of myself and how I caught this as early as possible, not waiting for clinical trials or the medical community to legitimize or endorse procedures outside of the public health care system. I expect, somebody less fortunate than myself, who has had this disease progress for many more years would still see a large benefit, but not necessarily a complete recovery. It is so important to act quickly to stop further brain damage. I have not only stopped it, but also reversed my symptoms to back to before I knew I had a problem.
I would especially like our Canadian Health Minister to read this account, who has publicly stated on television that there is no evidence to support research into CCSVI – I am evidence!
I would especially also like to give everybody at the clinic a heartfelt expression of gratitude from myself and my family, for allowing me to continue to enjoy my life in the future as I had always dreamed
Take Control of your life and don’t wait on others!