Symptoms... Anyone else with the same?

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

Symptoms... Anyone else with the same?

Postby nicko » Mon Dec 14, 2009 9:30 pm

I was diagnosed with MS 5 years ago. Since my diagnosis i've had noticable circulation problems. My entire left arm goes blue in color, same with my left foot. Cold does not trigger this , physical activity seems to be the trigger. Say i'm on the treadmill trying to get my exercise for the day, my arm would be blue.

My neuro has always told me that the circulation issues are non MS related.

Over the last two years in particular i've had pain in my neck below my ears and sometimes behind. If I massage the area thats painfull I get very dizzy. Not to mention everytime I bend down for any length of time more then say one minute and get up, even slowly I almost black out.

With all this new info on ccsvi its seems as though i may have a jugular issue??? Although i'm no dr. But its all seeming to make sense to me know.

Anyone else with similar issues?
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Postby Algis » Mon Dec 14, 2009 10:22 pm

Not the blue-ish part; but the neck part. If I 'massage' that area or if I rotate the head in larges circular movements I quickly feel dizzy.

It also makes sense to me but I will see after investigations.
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Re: Symptoms... Anyone else with the same?

Postby thisisalex » Tue Dec 15, 2009 12:55 am

nicko wrote:... Not to mention everytime I bend down for any length of time more then say one minute and get up, even slowly I almost black out.

Anyone else with similar issues?


the same here: every time i bend down and get up i feel dizzy. my wife is always angry with me she has to make works involving bending :D

and check out my first MS symptom's story:
http://www.thisisms.com/ftopict-9242.html

alex
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Postby Rokkit » Tue Dec 15, 2009 8:25 am

I don't turn blue, but my right arm/hand and right leg/foot and lower left leg to some extent get cold easy. Not on the treadmill though, they get warm there. See, I don't get neuros saying circulation problems aren't MS. How can they say that? The brain stem controls circulation. If you have a lesion in the right place in the brain stem, voilà.
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Postby zap » Tue Dec 15, 2009 9:16 am

the blue hand sounds like Thoracic Outlet Syndrome to me, but dunno about the same thing in the foot
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Postby Habenoughyet » Wed Dec 16, 2009 8:22 am

Yeah, I also have cold limbs on the right side, not blue-ish, but cold none the less. I also noticed, in my case at least, that my heart rate is above avg., when testing my blood pressure levels, I have high blood pressure. But, I'm simply wondering if the heart rate is associated, perhaps, to vein stenosis somewhere in the body. The heart compensates for lack of circulation of blood...

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Postby nicko » Wed Dec 16, 2009 5:49 pm

oh yes,

Now that you mention it, my heart rate is always above average. About 100 beats per min at rest. I also get a extra beat in there from time to time that kind of makes me lose my breath for a split second. I mentioned the extra/skipped beat to my cardiologist(had him for mitoxantrone) and he said some people have it and its nothing to worry about if its only every once in a while. Some days i've had 10 extra beats. But sometimes I have no extra beats for weeks.

But last time i've seen the cardiologist he was trying to check my pulse in my neck. He tried one side, then i've seen him stop and look really close to my neck and then try the other side. He never did mention anything about why he did that. But that was about 4 months ago.
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Postby selkie » Wed Dec 16, 2009 6:27 pm

nicko, have you ever had an ultra sound done of your heart - what you're describing sounds like a mitral valve prolapse (which I have) and is a very common condition, usually not serious. It does cause rapid heart rate, irregular heart beat, a slight reflux of blood, and sometimes a little chest pain. Might be good to have a cardio vascular person check that out.

Anyway, I have the dizziness 24/7, my first presenting symptom; when I massage the back of my neck, my whole head just feels "weird"; I also get dizzier when bending over and straightening back up, and I have pain in both sides of my neck that comes and goes but is right where the jugulars are. My neuro has always shrugged all this off.

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Postby nicko » Wed Dec 16, 2009 7:10 pm

I've had numerous wall motion tests done. Where they inject something that sticks to your blood. They can see how the blood flows through the heart. All of them were normal, i'm assuming those would pick up the mitral valve prolapse you describe?? I've seen the video after the test, you just see the blood flow through the heart. Not the actual heart itself. But where my extra beat is only random and not all the time, it might not show up during the half hour test.

Wow it seems as the dizziness from bending over and getting up is very common. Sometimes when I get up a little too fast I have to sit back down so I don't black out.
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