Not 100%

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

Postby Islandgirl » Sat Jul 11, 2009 10:20 pm

Well I almost go it right. I meant to say if anyone wants to know more about Gluten Ataxia and this specialist google (kiaser celiac multiple sclerosis), not mononucleosis. IG
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Postby Islandgirl » Sat Jul 11, 2009 11:02 pm

I thought of more information and to answer the pain question.

I have very low BP

I was staying with a PT and she could see that I was in pain. She said I was all out of alignment and my back, left side was swollen and my neck had swollen muscles on the left side. My MRI shows most of my lesions on the left side which would affect the right side of my body. The right side of my brain has only a few small lesions. So my pain may just be alignment. If that is the case and I have MS I am in remission. IG
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Postby sou » Sun Jul 12, 2009 1:27 am

Hi.

I have been thinking that it is reflux that could cause MS, not stenoses by themselves. Hence, the fact that there was nothing wrong when you had your MRV does not mean that this has always been the case. Maybe your muscles press the veins under certain circumstances?

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby gibbledygook » Sun Jul 12, 2009 2:10 am

I believe Prof Dake was doing some scans of the back for somebody with ALS and found vascular irregularities there. Perhaps the whole of the back/torso should be scanned...
It does sound as though you have some kind of blockage which is causing the veins/arteries in the left shoulder to become dilated...Did he just check your jugulars and azygous?
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby cheerleader » Sun Jul 12, 2009 4:27 am

Island Girl-
Words cannot begin. Thank you for "taking one for the team" as Marie said. You went beyond the call of duty in getting tested, and I hope and pray you find some answers in all of this. Marie has mentioned gluten ataxia on here before, and how the lesions mimic MS. I wish you continued help in this search, and I can only imagine how frustrated you were not to find something that could be repaired at Stanford. Dr. Dake is a compassionate man, and true healer, and if he comes up with more folks with your profile, I know he will continue to search for answers.

I had one random thought here on vacation...the mind wanders. Could cerebropsinal fluid levels have anything to do with a break in the blood brain barrier...perhaps disc or spinal injury could create some sort of reflux in spinal fluid, leading the villi in the brain to overreact, and open up the BBB? Won't have time to google this idea until I'm home next week...but wanted to throw my random, tennis induced idea out there...like one of my lobs :wink:
best to all, and appreciation to you, Island Girl-
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Arcee » Sun Jul 12, 2009 6:28 am

IG, thank you for following up with the details, especially after such a challenging, and exhausting experience. I really admire what you have done and are doing, and I wish you the best of luck pursuing these leads.
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Postby Sharon » Sun Jul 12, 2009 6:28 am

Thank you IG for your update. Along with everyone else, I was shocked when Marie posted you had no stenosis.....Was glad that Dake was taking care of you --- you know you were in the best of care.

You are fortunate to have Marie at your side as you start your next adventure. She will be able to help you sort through all the medical reports. Please continue to keep TIMS updated.

Take care,
Sharon
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Postby skydog » Sun Jul 12, 2009 11:46 am

IG I believe I am the man that you mentioned in an earlier post that shared similar results and share a similar same history. I had severe Mono at age 18, Chicken pox at 40 and possibly have overlooked Celiac disease along the way. I will be looking into this also. In my case it may not be 100% but quite likely 50/50. So far I feel the stent placement was a good move. I am now almost two weeks out of surgery and doing better than expected. Ruling out the placebo effect and doing my best to search out and conquer the remaining issues. Here to help in any way possible for all people affected by this condition whatever it ends up being. Peace and Health, Mark
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Postby skydog » Sun Jul 12, 2009 12:02 pm

Sou, I wrote down some interesting thoughts one night along the same line about muscles interacting with the venous flow. My back and neck tend to be constantly tight from an old skiing injury. I compressed two discs leaving me with a long standing deflection in my spine between the 10th to 12th vertebrae. Also a way out of the box thought which I posted sometime back that a runaway Fight n Flight response may have something to do with the overall constriction of the venous system. Hope someone with more knowledge and insight can elaborate on this more. Cheers, Mark
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