Fatigue, CCSVI and MS

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

Postby costumenastional » Fri Mar 12, 2010 5:55 am

haha well, you know what they say: never say never.
Although i d love to change sex if i was told it would be my only symptom...

Just for the record, i am a man too. Nice to meet you MAN haha
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Postby crocky » Fri Mar 12, 2010 7:14 am

Really interesting thread - the fatigue question has been my whole motivation to become involved with ccsvi.
I too suffer from 24/7 heavy duty fatigue, it totally destroys my life and I'm just hoping beyond hope that liberation will help me get rid of this most debilitating problem.
I am scheduled to go to Poland to see Dr Simka early in April, and of course will post on here to let everyone know how it went.
Thanks to all the pioneers on here who have motivated me to get this far - Suzanne
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Postby tzootsi » Fri Mar 12, 2010 7:55 am

I just want to reiterate - my wife has very little, if any fatigue issues, and she has been found to have some type of reflux issue in her left jugular.
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Postby fogdweller » Fri Mar 12, 2010 11:51 am

sbr487 wrote:Let me take back my words and say this: if you dont have fatigue, you dont have CCSVI ... :?

Buffalo study is a good example, normal people have CCSVi. Maybe their body is just waiting to morph into MS, who knows.


I seriously doubt this. Something like 26% normal subjects had CCSVI. Nowhere close to 26% of normal people go on to develop MS. Something else is going on. Maybe a person needs both genetic susceptability and CCSVI to develpo leasions in the brain. One person in this forum reported disappearing stenosis when tested later. Maybe the issue is persisting, constant CCSVI. Maybe something else altogether. Part of the excitment is that we are now looking in a whole new direction that may have some very interesting answers, and unlike everything else we have looked at, there is actually something we can do about it!!! Angiolplasty and stenting to restore flow.
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Postby Zeureka » Fri Mar 12, 2010 3:49 pm

Cece wrote:Rokkit and magoo, I still have just under two months to wait but then I am hoping to join you on the other side of this. I have terrible fatigue and like has been said already, it is not well explained by the autoimmune/m.s. model. I have to be careful, if I let myself get upset or in a disagreement, then so much for whatever I was going to be doing, it's back to lie down for an hour or two.

Hi Cece, so your treatment scheduled for May? That's great!! Me as well! And I look so much forward to it, because also for me fatigue is the worst enemy in my MS! And hope to get rid or reduce it at least!

When I think back in the 10 years I had MS as a student - but did not know - how often I had these spells of deep tiredness and wondered "but what is happening to me"? I always thought had maybe Mononucleose, as some of my friends experiencing deep fatigue had been diagnosed with that. Well it also starts with M... and my biggest MS attack in 2005 was then instability, I felt like in a complete cloud around my brain for 1 year and could not walk properly since missed my body balance. And now sometimes this cloud, when fatigued comes back...

it is strange, one can still think properly, but just feels like if in another world and soooo tired. And noone around you has a clue that you are so distant from them, you still talking with them normally, but feeling as being in another hemisphere.

Steffi
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Postby Cece » Fri Mar 12, 2010 5:57 pm

Congratulations, May is going to be a great month!!

Zeureka wrote:I always thought had maybe Mononucleose, as some of my friends experiencing deep fatigue had been diagnosed with that.


I was afraid I had undiagnosed cancer, as a teenager, when I first started experiencing the symptoms and fatigue.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby zinamaria » Sat Mar 13, 2010 1:19 am

Hello all.

Just jumped on board here...while we wait and hope for benefits from CCSVI I feel strongly towards diet and exercise for relief of fatigue, although I still get hit myself. However I know these two things have helped me immensely, giving up refined sugar, and lowering use of all of other sugars and yoga, specifically what is called pranayama, or deep breathing.

Sugar acts very much like a drug, the 'get high' then 'crash and burn' effect of sugar will increase overall fatigue. The problem is most of us are not even aware of our sugar dependency and even when we think we are clear of sugar because we don't eat cakes and such it's amazing how much sugar is in almost everything we eat (even the Sushi bars put sugar in the rice!), but it's added to canned foods, breads, etc. So I have found it important to be severely watchful of sugar intake in order to steady blood sugar levels, which in turn keeps me less tired.
(I am currently writing a book on the long road to being sugar-free, breaking the dependence, featuring as the protagonist THE SWEET TOOTH, who does eventually end up getting murdered, okay well extracted...well now you know the plot! For those of you who like murder mysteries anyhow!)


And Yoga: below is from a link
http://www.yogabasics.com/learn/yoga-for-fatigue.html

"Yoga for Fatigue
We all have experienced common bouts of fatigue as a normal response to over-exertion, emotional stress, boredom, or lack of sleep.This common experience of low energy and/or motivation can usually be alleviated through proper rest, exercise, stress reduction and nutrition. Yoga is an especially effective treatment for fatigue as it combines movement, rest and stress reduction with the cultivation of prana (life force energy) and the activation of the parasympathetic nervous system (rest and renew response). The remedy for some cases of fatigue can be quite obvious, while other types of fatigue will require much more self-observation and self-inquiry to find the proper mode of treatment. Yoga is an optimal healing modality for fatigue not only because it addresses the physical, emotional and energetic causes of fatigue, but also because it fosters and facilitates the self-observation and self-inquiry required to understand the roots of this disharmony."

Namaste,
Zina
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Postby Zeureka » Sat Mar 13, 2010 1:47 am

Noticed that Swank diet and light exercise eg Bioginnastica (similar to Yoga) and Aquagym also helped me with my fatigue... a pitty I dropped out the gym lately due to too much work - was lacking time...I will try to change that again now that the sun is finally(!) starting to smile in spring 8) , as I got to feel the impact of no gym in this never-ending dark, foggy and snowy winter...we had the worst winter in Italy ever...similar to the northern latitudes this year!

Now started with IBT and soon treating CCSVI in addition. And hope for an even improved cocktail!
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Postby mcewthom » Fri Apr 09, 2010 4:16 pm

Hi , I have been reading about Fatigue and CCSVI, trying to Relate these .. I Think the Fatigue in MS is due to the CCSVI - Have we asked the few people who didn't have CCSVI when scanned if they have this horrible Fatigue Feeling all the time...This would prove something. X Tommy
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Postby tzootsi » Fri Apr 09, 2010 4:56 pm

mcewthom wrote:Hi , I have been reading about Fatigue and CCSVI, trying to Relate these .. I Think the Fatigue in MS is due to the CCSVI - Have we asked the few people who didn't have CCSVI when scanned if they have this horrible Fatigue Feeling all the time...This would prove something. X Tommy


My wife, who has mild ms, doesn't have any noticeable fatigue. She had the procedure done today - blockage in both jugulars! I think fatigue, like other ms symptoms like burning skin, weak leg, vision problems, etc is just one of those variables that some people have & some don't. CCSVI seems to cut across all symptoms.
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Postby Vhoenecke » Fri Apr 09, 2010 8:59 pm

Everyone is so different with the same disease. Some have bowel trouble, others don't. I mainly have fatigue and right side numbness also pain in lumbar spine. We all react differently to vein trouble as there are different veins affected in different places for a different amount of time. All of our problems are real and hopefully in my lifetime will be gone.

Val
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Postby girlgeek33 » Fri Apr 09, 2010 10:02 pm

I just saw this thread and glad to see this discussion as fatigue is one of my two worst symptoms!

To me fatigue is just beyond tired. It is there even when I feel like I have some level of energy. As strange as that sounds, it is just the drained feeling behind my eyes and my body is pushing to go on. Even tonight when I was out with friends and family, I was hyped up & chatty, happy to see everyone, but underneath it all I just felt like part of me was dead and fighting to be me.

I have taken various meds for fatigue over the past 11 years, Dextroamphetamin, Provigil, ADD drugs... There were times they worked but in the last year I can feel the drugs in my system and the fatigue winning. To feel my body want to go and the drugs wanting to make me go and just still have that overwhelming fatigue with its stranglehold on me, ugh!

I was an extremely active and energetic person. I too was able to keep fatigue and all MS symptoms in check through diet and exercise. But there came a point in this disease when that didn't even matter. So for those who say you can completely control fatigue through diet & exercise, not always. I hiked, kayaked, worked out, walked, rode bikes, if it was active, I loved it and thrived on it! And then it was a fight with my body to be able to do it here and there. And then a fight to be able to at all. I was the annoying person who sickened my friends because I was up at 5:30 in the morning and felt the whole day was better if I started with some form of exercise.

I miss that "me". Before dx, I hated that the Dr's were blaming my age and I wasn't even 30. I truly despise the feeling like in my head I feel like I can do X, Y & Z and I'm up and about for 5 minutes and it feels like someone just pulled the plug on me. And so many people look at me and tell me that I look like I'm doing so good. I haven't been able to work since 2004. I've had to fight with disability insurance companies and Social Security judges because you can't SEE the affects of fatigue.

So, me too, if it is the only thing that improves through CCSVI Liberation, I will be a very, VERY happy woman!!!! Everything else that improves, gravy!!!! It has been fun these past 6 months just thinking of the possibilities of being free of fatigue! :)

MRV has already been done & showed Bilateral Compressed Jugular Veins!!! Doppler & consult on Monday and treatment within a week or two!!! I look forward to writing about improvements!!!!!!!!! :D
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Postby girlgeek33 » Fri Apr 09, 2010 10:16 pm

Oh, and read some more posts and want to relay....

My cousin also has MS. He was dx about 10 years before I was. His physical symptoms are much worse and he has not had the difficulty with fatigue as I have. He had mentioned for many years that he never felt any fatigue.

We as MSers all know that each persons MS is very different from the next persons. We deal with non-MSers all the time that try to generalize what MS is and what we MSers deal with. That leaves us being sensitive to generalizations about MS. Hard to deal with it from people who don't "get" MS let alone dealing with it from another MSer. So, considering that at one point or another, we've all dealt with this sort of thing from a non-MSer, be understanding if we get sensitive feeling like we are dealing with it here.

On that note, just to vent, saying that if you don't have fatigue, you don't have MS or CCSVI, is like saying that if you don't have numbness in your feet, you don't have MS. or if you don't have spasticity, you don't have MS. JUST venting.... :wink:
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