July 21, 2012 at 5:01 pm #2650BarbaraParticipant
Yes, now that might be a curious connection! I THINK I have CCSVI, based on comparing my axial MRI slices to the example in The Driscoll Theory, i.e. my internal jugular vein is ‘large’ on one side, also one of my transverse sinuses may be stenosed, as Dr D describes. It sure looks it on the MRI, one very large transverse sinus and one feeble one but I suppose only an MRV will show it for sure.
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!July 22, 2012 at 10:55 am #2652MJParticipant
Yes, it sounds like you have CCSVI. Are you going to get an MRV? I hope to – I’m just having trouble getting doctors to listen to me!!!July 22, 2012 at 8:31 pm #2654BarbaraParticipant
I bet there isn’t one person on this website that hasn’t had trouble with doctors!! It’s a very odd thing, all this reluctance, it really doesn’t make sense.
I’d love to have an MRV but firstly I am waiting for the geneticist, then the immunologist, they don’t seem to like sending you to more than one specialist at a time in this country (UK). I suppose it’s all down to the way the service is structured and costs. To me it’s false economy, they ought to have all the specialists at one centre (like they did 50 years ago) and you go there for a day (or maybe more if your condition warrants) you get tested, assessed and treated and before you know it, you’re back at work and supporting the economy again – simples!!
Also in this country, they only acknowledge CCSVI if you have MS, which I don’t have.
(UK)December 25, 2012 at 10:50 pm #3252SunshineParticipant
This thread is either primarily inactive or is over 90 days old and will be closed. Please feel free to reopen the discussion by clicking on “New Topic” in the upper right hand corner of this page. Thanks!October 26, 2013 at 11:15 am #4547Dr. DianaKeymaster
My Rheumatologist refused to give me Diamox because he said it’s a blood vessel thing which is a heart thing and I would have to get POTS confirmed first.
The Internist told me the halter monitor results came back normal. I said, “Are you kidding me? What is their definition of ‘normal’?
Any thoughts? Any ideas on how to get POTS testing? Oh, and my heart ultra sound came back ‘normal’. Three valves have insignificant stenosis and regurgitation. Well, what is their definition of ‘insignificant’?
You bring up some great points, MJ. First, an eye doctor “in the know” is more likely to understand why we need Diamox than a rheumatologist. I’m wrapping up the in-house treatment trial now, and when I can get this published with explanations, you shouldn’t have this much trouble getting Diamox any more! As far as what doctors consider “normal” is based on what they consider “abnormal”. If our funky heart changes are not in their criteria for abnormal, then we’re “normal”. Ditto with things like sleep studies. Dr. McDonnell described a teen with over 200 wake-ups and sky-rocketing tachycardia during the night. Those were not part of the criteria for abnormal, so it was deemed “normal” when it clearly was not. Sometimes I feel that common sense has just gotten thrown out the window, sometimes! We all share in your frustration. I guess you know that it is important to save the RAW data. Even if it makes no sense to you, it may to others down the road. Hang in, OK?October 26, 2013 at 11:20 am #4548Dr. DianaKeymaster
Yes, it sounds like you have CCSVI. Are you going to get an MRV? I hope to – I’m just having trouble getting doctors to listen to me!!!
MJ and friends, this is VERY important. Yes, I’ve seen that a lot of us have CCSVI, but if you’ve watched my videos you’ll see that this type of venous problem is systemic in most of us AND treatment with angioplasty provides fleeting, if any, response. It can set us up for thromboses, however (as happened to my son and I). One reason I took my book down, was because people had difficulty separating “CCSVI” from “angioplasty”. I am working on figuring out what is causing venous abnormalities (beyond genetics). A big part of our venous problem is that the veins become to LARGE (angioplasty which dilates veins obviously won’t help that!). I’m getting closer… Meanwhile, I try to stay away from saying “CCSVI”, but substitute venous (and while we’re on it — arteriole) abnormalities. Cool?
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