Sunday, June 13, 2010

CCSVI causing Stress????????????

To start with the update on my status, I am still doing very well and feel great, for the most part. Yesterday I woke up with a headache and was very scared that I was falling backwards in my progress. As the day progressed, I realized that it was a sinus headache and not my MS headache. I have to come to grips with the fact that I will have the occasional headache, just as everyone does from time to time, and not to stress myself out over it.

Now onto the subject of the day. STRESS. We all know that Stress is not good for anyone let alone people with MS. As I was laying in bed the other morning, it struck me that since the announcement of CCSVI last year, some MS patients seem to be getting worse. Has anyone taken note that the added stress of knowing that there is a treatment to alleviate some of our symptoms, but yet is not allowed, may be causing undue stress on MS patients? This is not an up front, conscious, Stress, but a constant underlining condition. We all have stress that causes us some problems. I know that when there is a stressful time in my life, I can usually recognize it and change what is going on in order to lessen the affect. How will this be possible for so many people that are on waiting lists, not knowing if they will be able to have the procedure or how will they pay for it. In talking with so many people in the last few months, almost everyone as commented that they are have more problems recently. It struck me as interesting that all of a sudden people were getting worse. I thought back to before I was Liberated, and how my walk was, compared to the year before, and how my headaches had been more intense. Was this a reverse placebo affect or was it the amount of stress I was under, trying to find a doctor that would listen to me, that was causing more problems. I would have to say that it was the underlining stress.

Now that the MS Societies have announced the recipients of the funding for research, we know that the Society who's dogma is to be supportive of MS patients is really only self indulging. None of the funded researchers are doing treatments, and studying the true affects of the procedure. If this were a drug, they would be giving it to the patients and studying the positive and negative results, just as they do with all the other treatments that Pharmaceutical Companies come up with. Instead, they are studying how to test, and what to use for the testing. This would be the same as testing a new pill and first testing to see how people might swallow a pill without actually giving them a pill to swallow.
So I think it is safe to say that the Stress levels in the MS Community have just increased.

I feel compelled to only support any function or cause that has the funds going directly for the research of "CCSVI the TREATMENT".... By doing this I am looking into going to Seattle to attend the FIESTA to HELP SOLVE THE MYSTERY OF MULTIPLE SCLEROSIS on June 27th. I am also going to be traveling up to the Vancouver area to meeting with some of my new friends to talk about life after being Liberated.........


  1. Hey Janet, I just face booked you also. I agree with all that you are saying here. I've never been so stressed over my son's situation in the last 13 years!!! It's tragic what has just happened regarding funding. As I mentioned in my note to you, I am taking my son to Poland on June 17, treatment on June 23rd and home on June 30th. So, if you are in Vancouver after June 30th, please email me at and we'll get together for a coffee for sure...b

  2. Good Morning Bev
    It is wonderful that you are able to take your son to Poland to get the procedure. I pray that he will have all the wonderful results that I and so many others have had. I am going to be on the west coast from the 22nd until the 29th. It looks like we will be just missing each other. I love the Vancouver area, and will most likely get back out there in the future. Maybe we will be able to meet then,
    Have a safe and rewarding trip.

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  4. Hi,
    I didn't have a chance to read your whole procedure but I agree!! Since I learned about CCSVI last week, I feel like I'm on a mental roller coaster and it's taken an emotional toll on me. Should I or shouldn't I get it? Will it work or will I have complications? Should I get tested now or later?? ETC! It's constant alternation of hope and fear and it's making me crazy and really draining me of the little energy I have. I'm having to limit myself to 15 min a day of reading about CCSVI on the web. My symptoms are horrible this week, due to all the stress this has caused. I'm definitely very grateful for the possibility of treatment, but it's just so hard to manage my own mind in relation to the news!

  5. For six years doctors are saying it is in his mind. So my son must be a lunatic. We have saved money to get him the CCSVI Doppler Ultrasound Screening. Result is obvious, left side of his Vein is showing a narrowing plus turbulence in his blood stream. Great, now saving for the procedure which may take another year or two.He can take pills, no problem (insurance will pay) even though they are more expensive than the liberation procedure.Politics and Pharmaceutical industries will always go well together. And we have to take care about our selves plus our children. Great!