6 out of 40 (dake's patients) worsening over time

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby 1eye » Thu Mar 03, 2011 8:46 am

I agree completely with all your points.

Hughes syndrome is often called MS.

My father and brother both had/have type 2. I am hoping somehow to escape it.

(My brother also had leukemia. I am disappointed that I would be given mitoxantrone when they knew that, however family history seems to be unimportant until it is not. I also have a family history of heart disease. You can't have it both ways: either it was that, or the mitoxantrone, or both. Recent genetics evidence suggests it was both.)

The ones in Canada (heat to the feet) have an awfully hard time working with neurologists because of a few outspoken ones who wield a lot of power.
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Postby Cece » Thu Mar 03, 2011 10:10 am

bruce123 wrote:I'm not sure of the rules but I don't see why Dr. Drake can't publish a paper without irb approval. The paper would simply state what he found and I assume he would also state that the findings were not part of an approved study. I have attended many scientific conferences and every presentation is published in the conference proceedings. I assume that the proceedings of the CCSVI conferences are also published as conference proceedings.


I might be wrong, then. He did present on fatigue outcomes in his initial patients, where the RR MSers had 50% reduction in fatigue at a year. There was also a publication in a vascular newsletter with some of his results last fall.
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Postby cheerleader » Thu Mar 03, 2011 10:13 am

Leonard wrote:As wheelchairkamikaze wrote: .. there's the distinct possibility that what we call Multiple Sclerosis isn't really one disease at all, but rather a collection of similar diseases that share symptomatic and diagnostic profiles.

Agree with WK. As we saw in Jeff's case, his stenotic dural venous sinus looked a lot more like a lifelong case of idiopathic intracranial hypertension and pseudotumor cerebri (especially with the complete peripheral vision loss in childhood and pulsatile tinnitus), but because he showed up with enhancing lesions on his first MRI, he got put in the MS column. IIH can cause demyelination, but it was never considered. It was only when we saw his MRV, that the full picture became clear. The IVUS completely clarified this issue last month. No valvular issues, only a stenotic left venous sinus, which has, hopefully, been repaired.

There is still much to learn, and Dr. Dake is to be commended for testing and treating central venous stenosis. He was not treating MS...and because of this, I hope he can write up papers on those, like Jeff, who had other, diagnosable issues. There is no IRB approval needed for treating stenotic venous sinus.

Dr. Dake believes the progression may be due to
1. undertreatment/missed flow issues 2. Wallerian degeneration
3. immune system progression separate from blood flow.

It will be many more years before the full picture is illucidated, but Jeff and I are so thankful that Dr. Dake was willing to look at venous stenosis and neurological disease from a new vantagepoint, and to give Jeff his correct diagnosis. He will never recover his eyesight, since it has been decades. But the whoosh is gone, he is awake, no headaches, active. Now, he can finally heal.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Leonard » Thu Mar 03, 2011 12:56 pm

I am a happy person too. Since my neck veins were opened, which took 3 procedures, my night spasms are gone completely, my headaches at night are over, I sleep well and dream a lot really deep dreaming, and I feel ok in the morning, my head is quiet, the numbness over my body is largely gone. I also have more strength in the legs (but has been better) and in fact I walk ok. I do believe that I have left the MS behind me. Of course, I need to make sure the veins stay open but I am experienced there and I beleive that I could tell when things change.

But I am not quite there yet. Although my blood sugar was ok and the fast insulin response was as well, I am convinced (from symptoms and signs that I recognise) that I have a developing diabetes 2 too. Many signs are very similar to MS. I also believe that if I had not had the predisposition for diabetes, I would never have had MS. I had stenoses in the Azygos, left and right IJVs, lost control of a hand when I was 14 years old, but grew over it, could run 10 miles etc. But then, at mid age, when the glucose condition became weaker because of hardening veins and RBC stiffening, I got MS, at 47 years.

The symptoms I have now are diabetes related. I can tell from my father who had very similar signs when he was diagnosed 25 years ago. He controls his diabetes through diet and metformin and glimperide (with no side effects) already for 25 years and is in good health. So that can all be done.

The problem is now that my blood sugar did not show the symptoms yet. My theory is that I do have a weaker glucose condition (because of the stenoses) and thus things will show up earlier (diabetes has a long lead time before onset/diagnosis). I guess I should have my ATP checked because that may be an early indicator. I just wish endocrinologists would help me, think with me, but I sense this is all too new for them...
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Postby Rose2 » Sun Mar 06, 2011 6:12 pm

Cheer and Leonard,
Ditto to both of your posts.
Joan, you know how deeply we are all indebted to your insight, intellect, compassion and tenacity.
Leonard, I would love for everyone to understand, also, that once Diabetes 'shows up' the damage is done. We must be cognizant of our diets NOW.
Cece, I am also hoping that Dr. Dake can use me in some paper or study information somewhere, sometime.

Meanwhile, I am doing my best at loving the good life. And I never take a day or a minute for granted.
Praises for the Summer of 2009 when I found this Board and Joan's posts.
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Postby eric593 » Mon Mar 07, 2011 3:32 am

Leonard, have you had an abnormal A1C test? I think it's much more accurate at detecting blood sugar problems since it looks over longer periods of time.
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