Dear Dr. Stewart.
I thought that you might be interested to read one reaction to your interview with Dr. Godley, etc., regarding CCSVI. This post was written by me, and I have MS.
I have had RRMS for 17 years, and I am now going SPMS - literally losing function by the week. I have never been on any drugs for MS. I have never been offered any drugs for MS. Honestly, I would never take any drugs for MS, because I have never believed that immune modulation is the definitive path. I am not interested in merely ameliorating symptoms, I am interested in stopping the process. If I have a headache, I want to get at the root of it, not just take a tablet that will make my stomach bleed, or trigger any other unpleasant side effect. My view is the same for any dis-ease.
Of course, I am a layman, so what I write has much less weight to you than the views of Canadian Fellowship trained Physician, but I have to tell you that I had Doppler US, and an MRV at False Creek Surgical Centre, and what was found is unequivocal (I would be happy to share images and impressions); I have "strictures" in my IJVs bilaterally - one high, and one sub-clavian on each side. I have massive collateralization - including my thyroid vein. Now that part is interesting, as the thyroid vein ought to empty into the IJV at some point, but has found the need to collateralise, and I cannot keep weight on. I am 6'1", and am down to 149 pounds. I have lost 10 pounds in conjunction with my latest, now year-long relapse. Next I will be down to i45 pounds, then 140, at which point, I will probably die. I do not know any more than you do whether having IJV strictures relieved will help the MS, but I do believe that my weight loss is linked to the thyroid dysfunction, and that relieving those strictures will benefit. I cannot get any attention for my venous problems, that are slowly killing me, because I have MS, and there is no proven relation. I am sent to the neurology department at UBC, who know little to nothing of thyroid/metabolism issues, otological issues, venous haemodynamics, etc.
So, I must ask you, since you dismiss the venous connection, what would your (hypothetical) advice be to me, who is slowly dying of starvation, which is arguably linked to venous obstruction from the thyroid? Of course, there is no link to MS, and I have MS, and I have no one to turn to but for neurologists. You are a neurologist, what do I do?
Here is the link. If you go to the main CCSVI forum through curiosity for what PwMS feel, check out Dr. Sclafani's thread. He is an Interventional Radiologist, who had been doing treatments on venous stenoses in PwMS. He is very reasonable, and is engaging us as PwMS. He says that he is learning as much from us, as we from him. You may find it illuminating.
Villagemaid wrote:ARGH.....my email got kicked back to me as undeliverable.......
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