Fatigue, CCSVI and MS

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

Postby jr5646 » Thu Mar 11, 2010 9:18 am

This "is" an excellent topic... My wheels are spinning for sure... so glad to hear the fatigue lifts afer ccsvi treatment.. wow, it would be great to make it thru a day without crashing..

Wondering if other neurological disorders have fatigue as a primary even secondary symptom??

Muscle weakness (heavy arms/legs) goes along with fatigue too, right?

In my particular case, if the fatigue is worse, the heavyness is greater - obviously.

I'm to tired right now to research it .. lol Tired of being tired is an understatement...

Also, the sleep from being exhausted is not the same for me either... it's as if I'm more tired after I pass out for a couple hours - if thats possible and/or makes sense.. the brain clairity doesn't quite come back either..

Too much heat makes my head feel as though its gonna pop too.. and knocks me down quick... I just have to rest and usually sleep at that point.
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Postby Vhoenecke » Thu Mar 11, 2010 9:46 am

Two things that have really helped me with fatigue are as follows:
1)Incline Bed Therapy has allowed for blood flow to be more normal. I am now able to sleep properly at night reaching REM sleep and having dreams.
2) Modafinil(drug) they give to people with narcolepsy(sp) seems to really help with my fatigue. I do not like to promote drugs as they don't work for everyone but this has really worked to keep my fatigue down in the day.

I would say the biggest changes have been the IBT where the head of my bed is 6" higher than the foot. see the following thread if you would like more info.

http://www.thisisms.com/ftopict-8535.html

Val
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Postby tzootsi » Thu Mar 11, 2010 10:04 am

euphoniaa wrote:
tzootsi wrote:My wife's MS symptoms do not include fatigue. She was dx'd with a mild case of MS about 2 1/2 years ago. However her main symptom is a heavy right leg. She gets some burning skin, L'hermittes, cold hands and feet, and slight balance issues, but rarely any fatigue. Anyone else have 'non-fatigue?'.


tzootsi, I'm currently participating in an official MS research project at a local university, designed to evaluate our levels of fatigue and "teach" us ways to address it. I just finished the initial phase, which had us fill out a daily "Fatigue Impact Scale" (0-4) for various physical and cognitive issues directly due to fatigue. For 6 weeks, I've never rated my fatigue higher than a "0" for "no problem" or "1" for "small problem." My routine during that period included almost daily snow shoveling before work.

I feel very fortunate that I discovered the benefits of diet & exercise about 20 years ago, because I find exercise truly reinvigorates my body and mind. And I've learned how to sleep a lot and to sleep well. I wonder what I'll learn in the fatigue-fighting classes of the next research phase? :) I have one of the most definite cases of MS my doctors have ever seen, however, so I hope my efforts have helped, if CCSVI is detected in me someday.

As I've posted before, I'm excited as can be that CCSVI discovery/research promises to change the way the entire world of medical research looks at every disease. But CCSVI treatment is starting to look way more complex than it first appeared. Every MS patient presents in a different way, and quite possibly we might need to be treated individually.

Good health, good discoveries, good news to all.

P.S. And I do NOT generally have cold hands/feet without good reason (like when I'm shoveling snow), and I do NOT have low blood pressure or most of the other common, widespread medical conditions that people are trying to associate with CCSVI for some reason. :) Of course I've been getting lectures from other MS patients for not doing my MS right ever since my diagnosis. :D
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Euphoniaa,

Very interesting - my wife is adamant about her diet - no gluten, dairy, legumes or eggs. Lots and lots of veggies & seafood. Lots of supplements. She also takes LDN. She will bike or snowshoe several times a week. She has been 'dopplered' for CCSVI and she does have it, we are now waiting for an appointment with an IR.
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Postby Rokkit » Thu Mar 11, 2010 10:29 am

For what it's worth: I didn't have bad problems with fatigue before my stent procedure, but the problems I did have are largely gone. It's my only improvement really. During my procedure, they put something on my head to measure oxygen level in my brain. The oxygen level increased 14% when the stents went in.
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Postby Cece » Thu Mar 11, 2010 2:32 pm

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.
"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 magoo » Thu Mar 11, 2010 2:44 pm

Best of luck to you Cece!!!!! So Exciting!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby fogdweller » Thu Mar 11, 2010 3:29 pm

Rokkit wrote: During my procedure, they put something on my head to measure oxygen level in my brain. The oxygen level increased 14% when the stents went in.


One of the biggest problems with MS is there is no good objective measure of disease severity. Even the number of leasions on an MRI is not too objective. Here is a very good objective measure!

I have had PPMS for 38 years, very mild, and have not had significant symptoms that I would call fatigue. However I have had symptoms that sound like what others here are calling fatigue: exhaustion easily after exercise, very strong degredation of walking ability after 2 blocks, total uncoordination and lack of balance when I wake up during the night, complete exhaustion to a point near narcolepsy after I work in the yard for an hour, etc. Also recently cognative problems and difficulty concentrating and multi-tasking. They all sound like things that will be helped if brain oxygenation goes up. Lets hope.

Unfortunately my biggest problem for the past 8 years, neuropathic pain, probably won't.

BTW, my nom de plume of Fogdweller is because I leave on the Sonoma Coast of CA, not because of my cognative condition.
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Postby Cece » Thu Mar 11, 2010 4:17 pm

fogdweller wrote: ...complete exhaustion to a point near narcolepsy after I work in the yard for an hour, etc.


Yes...it's that feeling like you're about to collapse.

I think fogdweller is a nicely evocative name! I went with Cece because of the obvious (Ce Ce S V I).

magoo wrote:Best of luck to you Cece!!!!! So Exciting!


thanks magoo...I try not to get my hopes up and then I read posts like yours and I have to admit my hopes are up anyway... :)
"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 sbr487 » Fri Mar 12, 2010 3:03 am

I am very biased towards linking MS and fatigue (comes from personal experience). If someone left it to me, I would say if you dont feel fatigued, you dont have MS ... And then the brain fog which is like twin brother of fatigue ... The fact that these two symptoms are present almost all the time and improper blood flow is almost a constant phenomenon, it makes sense that these two are immediate effects of CCSVI.

PS:
For me, fatigue has been almost like a background noise for as long as I can remember almost 24X7. There is hardly anytime when fatigue is not present. That said, the level varies through the day (generally less in the evenings). Another damn thing about the fatigue is that it starts right when I start my day.
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Postby euphoniaa » Fri Mar 12, 2010 4:29 am

sbr487 wrote:I am very biased towards linking MS and fatigue (comes from personal experience). If someone left it to me, I would say if you dont feel fatigued, you dont have MS ...


Like I posted earlier, I notice very little fatigue these days, but I've spent my 36+ years of MS experience learning how to read my body and figure out what works for it.

I have definite MS. It was diagnosed literally overnight, the day after my very 1st MRI (at age 52) - without contrast - showed my brain was crammed full of MS-specific lesions, and lesions have been pointed out in my brainstem, C-spine, and optic nerve. Subsequent tests showed O-bands and whatever else they look for in spinal fluid. Evoked potential tests were also positive.

I have definite MS (and a few other disabling medical conditions), but no fatigue. Honest. :) And no one has found a trace of optic neuritis either.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby sbr487 » Fri Mar 12, 2010 5:00 am

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

BTW, the more research gets unearthed, it becomes more apparent to look at CCSVI as a standalone condition and not see it in conjunction with MS.
Buffalo study is a good example, normal people have CCSVi. Maybe their body is just waiting to morph into MS, who knows.

BTW, does anyone know if healthy people who had CCSVI were in what age group? According to Dr. Z, CCSVI is a congenital. I wouldnt be surprised if these healthy controls were below 25 years and did not have MS but had CCSVI.
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Postby euphoniaa » Fri Mar 12, 2010 5:23 am

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


How in the world could you come up with such a declarative statement when the research is just beginning? That's one of the problems these days, pure speculation is stated like this as fact.

Note to readers of this thread: You should wait for the actual research to give us a more in depth idea of who does and does not have CCSVI. Even the experts haven't come up with completely accurate diagnostic procedures for CCSVI even with the use of state of the art equipment, so don't take OUR word for it. We have brain damage. :)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby sbr487 » Fri Mar 12, 2010 5:35 am

Euphoniaa,

How in the world could you come up with such a declarative statement when the research is just beginning? That's one of the problems these days, pure speculation is stated like this as fact.


This was a statement coming from a MSer based on experience. I wasn't expecting this to get published in next edition of nature journal ...

As patients, I think we have some liberty to do some research on our own. Mine was just an observation ...
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Postby costumenastional » Fri Mar 12, 2010 5:47 am

I think sbr was trying to emphasize how important is the fatigue issue for her and why she feels like ccsvi may apply to her because of this.
No need to raise the tone.
She didnt make a general statement, just humoring.

But i agree with what you said about brain damage haha
We all have it :)
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Postby sbr487 » Fri Mar 12, 2010 5:50 am

Thanks, Costume ... though I am very unhappy that you changed my gender There are no known cases of MS causing gender transformations :lol:
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