It was January 2008. I had recently moved back to the UK after living abroad for 15 years. I was starting a new life after a very stressful period that had culminated in a number of major losses.
I remember walking up the high street on my lunch break and everything looked strange, like I was looking at the world from inside a goldfish bowl.
Investigations led me from my GP to a neurologist, from a diagnosis of migraine to Multiple Sclerosis.
Aside from the distorted vision my left arm and leg were also affected.
Getting the diagnosis was a shock and for a time I was quite low. I knew from my training as a psychiatric nurse that achieving some sort of control over what was happening to me would be important for my mental health. I also knew, as the saying goes, that ‘knowledge is power’.
In order to gain control I needed to learn as much about MS as possible. If I knew what caused it I could do something about preventing or at least limiting further damage. I decided to do everything possible to give myself the best chance possible.
From personal experience in the early days post diagnosis I realized that when I became stressed, anxious, frustrated or low my symptoms worsened. I also realized that worrying was the catalyst for these emotions. In addition to this I was aware of the mind body connection; what we think and the emotions we in turn feel directly affect our physiology.
For example when we feel embarrassed we blush, when we are stressed our heart rate rises.
My first goal was therefore to remove worrying from the equation. It just wasn’t an option anymore. I quickly realized it served no purpose in the first place, that it was just a habit and without it I felt quite liberated.
I had always been what I called “a worrier” and used to say to people when they asked about it, “I wake up worrying, I worry all day, and I go to bed worrying”. I consider giving up my addiction to worrying the first of many gifts I got from MS. I do still have episodes when I find myself stressing about something that happened or might happen. At these times I remind myself of the choice I have between worrying and worsening my symptoms and not worrying and enjoying the present moment. Realising that worrying achieves nothing makes the choice easier.
My second step was to try and critically analyse research that existed on the disease.
I was surprised to find that orthodox medicine knew very little about what makes the immune system attack and cause the damage to the myelin sheath that ultimately led to the symptoms I and other sufferers experienced.
As a layperson I found the research papers difficult to evaluate and, as most of the research was funded by pharmaceutical companies I suspected that their integrity was compromised by vested financial interests.
I was however relieved to find a book by Professor George Jelinek MD called ‘Taking Control of Multiple Sclerosis’. As both a person diagnosed with MS and a Professor of Emergency Medicine who also edited a medical journal, I had found someone who could make sense of the research and whose interests were no different to mine.
In the book he gives a very clear analysis of the pros and cons of each of the disease modifying drugs. Something I found very helpful as both the hands of my neurologist and MS nurse were tied to the point where they were not permitted to give guidance.
I chose Copaxone (Glatiramer Acetate) because it has significantly less side effects than the interferons and clinical trials indicate ‘that the chance of a relapse for a patient on glatiramer was about one-sixth of that for a patient not on glatiramer’. Also that, ‘approximately 70% of patients continually on the drug for 6 years were either the same in disability as when they started, or were somewhat better’.
These benefits far outweighed the disadvantage of injecting daily. If I find myself starting to think about stopping the injections, which believe me I do not enjoy, I always come back tothe bottom line of giving myself the best chance possible, and see it as the lesser evil.
This book also showed research into how important diet is, which led me to the Best Bet Diet and Dr Ashton Embry PHD, a scientist who became actively involved in researching MS when his son was diagnosed. Because he was primarily motivated to help his son, he was another medical professional I felt I could trust. The basic tenets of the Best Bet Diet is to avoid foods that have proteins similar to that of myelin, foods that are also considered antigens which can trigger an autoimmune response in the body. The 3 key enemies are gluten, dairy and legumes.
For more information I advise going to his website www.direct-ms.org. I also recommend reading his review, The Multiple Factors of Multiple Scleorosis: A Darwinian Perspective published in the Journal of Nutritional & Environmental Medicine (2004) 14(4), 1-11; found here: http://www2.kemc.co.uk/clients/msrc04/downloads/bbd_embry_JNEM__Multiple_darwin.pdf
When the excitement started concerning a new treatment and understanding of MS known as the Liberation Treatment and CCSVI, I was of course very interested.
CCSVI is a condition in which a blockage or narrowing of veins in the neck results in blood being trapped in the brain. The theory is that this in turn triggers an autoimmune response as a result of the deposits and trace elements that are contained in the trapped blood.
The Liberation Treatment opens those blockages, allowing the blood to circulate freely. Information can be found here: http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2944
Over time there were countless positive reports from MS sufferers who had undergone the Liberation treatment and were now experiencing noticeable improvements in theirs symptoms. For me that was the proof in the pudding.
Dr Embry’s paper, ‘CCSVI and Multiple Sclerosis: Integrating New Data to Help Guide Actions’ (found at http://www.curearchives.com/CCSVI-and-Multiple-Sclerosis-Integrating-New-Data-to-help.t6341-103.html ) evaluated the research available and summarized that ‘although CCSVI by itself does not cause MS it is a causal factor that contributes to its progression’; also that ‘CCSVI is a significant accelerant of the MS disease process’. Because of this her recommends ‘it is essential that every person with MS be properly tested for CCSVI as soon as possible’. He did not claim it was the be all and end all, and also advised continuing with the Best Bet Diet.
Although Dr Embry states that ‘presently available data indicates that the current drugs do little for slowing disease progression’, I personally see no harm in also continuing to take Copaxone even after the Liberation Treatment, as long as I continue to experience no significant side effects. Again it’s all about giving myself the best possible chance.
There were however, reports from some in the medical profession wary of both CCSVI as a factor in MS and of the safety of the treatment for it. Examples of two procedures that had resulted in death were even cited. These reports had planted a seed of doubt in my mind but I was reassured when I noted Dr Embry had disclosed the vested interests of those in the medical profession who were behind the scaremongering; that they had connections with the pharmaceutical companies producing the disease modifying drugs.
Although I was still cautious, in early 2010 I put myself on the waiting list for treatment at the Euromedic clinic in Katowice, Poland (http://www.euromedicpoland.com/index.php?setlang=eng ). They are the most respected
and most experienced practitioners in this field.
Due to the length of the list the expected wait for treatment is 1 year. There was also no deposit to pay so I was not committed to proceed even when my name was called. This gave me the time and space to give it lot of consideration, to evaluate more research and read further reports from medics and MS sufferers who had undergone the treatment.
When I got a call from Euromedic earlier than expected in December 2010 I decided that I was ready to go ahead with the treatment and transferred the £6000 fee. This included everything except flights.
On arrival in Poland my wife and I were collected from the airport and taken to a 4 star hotel where would be staying for 6 days. It included a clean and very comfortable room, and a substantial buffet breakfast.
On the first day after arrival I, along with 5 others, were taken for an eye and MRI examination. We were due to have the treatment on the same day and quickly developed a camaraderie that helped calm our nerves.
On day 2 we had a Doppler scan followed by the CCSVI procedure itself. Everything was monitored by an independent Neurologist, which helped to put my mind at rest.
The treatment itself was relatively pain free and took no longer than 30 minutes.
Results of the scan showed my veins were significantly restricting the blood flow from my brain and I had a malfunctioning valve on one side. The doctors inserted a balloon via a catheter and widened each vein so that my blood could circulate freely.
A couple of the other patients needed a stent inserted as their veins were in a much worse condition. Even though some in the medical profession believe that CCSVI has nothing to do with MS, I was and am glad that I had my veins unblocked. All that trapped blood in my head couldn’t have been doing me any good.
We slept overnight in the hospital and returned to the hotel for a day of relaxation. I wasn’t knocked off my feet and spent part of the day exploring the town and some of its café’s.
Two days after the treatment I went for the scheduled check up Doppler examination and was pleased that the scan revealed that my veins had remained open and my blood was circulating freely. The next day we headed home to the UK. I had a small amount neck pain for about 3 weeks, but did not need to take any painkillers.
I was really impressed by everyone working for Euromedic. The admin staff, drivers, nurses and doctors all spoke excellent English, were professional, polite and very supportive.
I hope that because CCSVI was diagnosed, the Liberation treatment will contribute to prevent further progression of my MS symptoms. I’ve had no relapse or serious fatigue since and continue to be hopeful that this, adhering to the Best Bet Diet and taking Copaxone will give me the best chance possible.
An MS nurse once told my wife that in her experience, if you don’t use it, you lose it, so I will also continue swimming 3 times per week to keep myself in shape.
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