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

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Postby LR1234 » Mon Jun 15, 2009 4:34 am

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Postby peekaboo » Mon Jun 15, 2009 5:33 am

Hi LR -

Good luck w/ your CT tomorrow / today? the cervical spine aka neck has sensory nerves running through. w/ you r symptoms i would expect some may be located there. did you have a mri when dx'd if so, did they spot any lesions? where the lesions are the nerves around them should be the ones effected. Veins and arteries are along the sides of nerves. All three one could say are companions. the collapsed nerve area should be close to the damaged nerve area...I think I got this right :?
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Postby LR1234 » Mon Jun 15, 2009 5:51 am

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Postby mrhodes40 » Mon Jun 15, 2009 6:56 am

LR I hope they see everything well, but since it is not a complete series they can of course miss something like an azygos issue. But c4/5 is still in the neck let's hope they do see something then. Your issues sound like Sharon's............... hopefully she'll comment on that
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Postby cheerleader » Mon Jun 15, 2009 7:19 am

Good luck with the tests...
Actually sounds alot like Jeff...low EDSS, lots of small, circular brain lesions, one cervical lesion at C2-3, bad fatigue, loss of peripheral vision, sensory issues- all the same. Jeff was also considered a "mild case" since he didn't have mobility issues...but his fatigue and depression were crippling in another way. He is now up and out of bed before the rest of the family, and the last one to shut off the lights at night...and getting thru his day with energy and joy. Six weeks since stents tomorrow!

Make sure they get an image of the internal jugulars all the way to the base of the head. Jeff's (and Marie's) stenosis were very high. Hope you get some answers!
cheer
Husband dx RRMS 3/07
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Postby peekaboo » Mon Jun 15, 2009 7:35 am

LR wrote:
How are you feeling Holly since your procedure? I have been watching everyone's posts with great interest.


Thank you for asking.

I do not have much to say at this time...We just have to be patient...it's hard to wait and see but ARGH :!:
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Postby chrishasms » Mon Jun 15, 2009 10:01 am

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Postby peekaboo » Tue Jun 16, 2009 8:24 am

LR - Any news?
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Postby LR1234 » Tue Jun 16, 2009 9:14 am

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Postby peekaboo » Tue Jun 16, 2009 9:27 am

fingers & toes crossed here too :)
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Postby Sharon » Tue Jun 16, 2009 12:18 pm

Hi LR -

I also have a rather large cervical lesion at c4-c6; I have some brain lesions. Going back to 1991 I had my first instance of stubbing my toe (pre-footdrop). I was diagnosed in 2003. I went from a 0 EDSS to about a 1.5 to 2 over a period of thirteen years. Since 2003 I have slowly but continually declined - my EDSS was measured at 3.5 this past winter. Unlike Jeff, Marie, Holly and you - I have not suffered from the fatigue and the heat sensitivity. I thought that maybe it had something to do with having only one jug blocked, but Holly had only one blocked so I can't make a case: i.e. two jugs blocked = heat sensitivity, fatigue.

I was also on LDN (started May 2008) - I felt much better on the LDN which was probably because of the endorphins. I did notice a slight progression of weakness though, even while on the LDN. I quit taking the LDN before going to Stanford, because of the contraindication with pain meds. Dake's team mate Dr. Farzanegan asked me to stay off the LDN until my follow-up in August.

I hope they were able to scan a tad bit higher than the jawline - this would be where Jeff's and Marie's blockages are. Let's keep our fingers crossed that you get some answers. Each time someone goes in for a scan, we all wait to hear what the images reveal. Aren't we glad that we have a group here who get excited over such things? :wink:
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Postby LR1234 » Tue Jun 16, 2009 2:12 pm

I......
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Postby LR1234 » Thu Jun 18, 2009 11:39 pm

I'm going to see my consultant today to get results.

I have the CT scans here with me and to the very very untrained eye (and comparisons with pics on line) they look normal, but I realise that reading these things takes years of studying and is a real technique.

I am worried I will be the first with no issues. I am taking LDN and antibiotics which I know thin the blood so I hope this hasn't affected the scans in any way.

Don't know why I am so nervous....As most of my symptoms are sensory I do wonder whether the azygos is more likely to be affected than the jugulars but I have RR MS and not PPMS so it is more likely to be the IVJ's.....I will let you all know what the consultant says.

L
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Postby cheerleader » Fri Jun 19, 2009 11:16 am

Hi L-
Hope you get some answers. I'll bet Dr. Dake could give you a second opinion, if you'd like his thoughts. He's seen a variety of jugular blockages, and knows what to look for in terms of narrowing and the development of collateral drainage in the neck. Keep a copy of your scan-

Don't worry about LDN or other supplements affecting your scans. If there is a mechanical issue in your veins, it will show up. You are wise to do all you can to keep your blood flowing- the CCSVI diagnosis is meant to serve you...you are not responsible to serve the diagnosis.

best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Fri Jun 19, 2009 1:12 pm

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