Fatigue, CCSVI and MS

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

Fatigue, CCSVI and MS

Postby sbr487 » Thu Mar 11, 2010 2:00 am

Fatigue is probably the most common symptom of multiple sclerosis and the majority of people with MS (PwMS) experience it at some point in their disease course, often chronically and for the entire course of the disease.


The fact that fatigue is one of the most commonly observed symptom by MSers is well known. It is important to note from the above quote (and I can vouch for it), fatigue is more or less there all the time, no matter what category of MS you are in.

Using immune theory as the basis, it is still difficult to explain the feeling of fatigue.

- The process of neuro impairement is due to the immune attacks on the iron (or dead cells) build up also leading to destruction of healthy cells.

- Even when MS is in remission (i.e. when immune is not), the feeling of fatigue stays with the patients even when they are recovering from recent neuro damage

- Fatigue has been attributed to lot of factors like improper sleep etc but these are speculations at best

Bring in CCSVI and things become a little more clearer ...

Feeling of fatigue makes sense since the improper blood flow is almost a permanent fact of MSers irrespective of category of the disease. The brain is starved of oxygen (one of its primary needs) almost all the time.

I think this is another aspect of MS that CCSVI makes it very clear, even to a common person like me. Though as a side note, I have had days (more in the beginning and less there after) when I have felt almost normal (including fatigue). Now that is still a mystery ...
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Postby costumenastional » Thu Mar 11, 2010 2:18 am

Fatigue is the main reason for me to embrace the CCSVI theory.
The way my head feels after i go even a bit more active than usual or after a have a smoke is like something is happening with blood pressure in my brain.
I dont have brain lesions, i know that all this sounds weird but before my first and only relapse i was into heavy weightlifting for the last 10 years. Now, a year after dx i cant lift 5 kilos cause my left eye vision gets even more blurred and my head feels like exploding. I dont believe it has something to do with already degenerated neurons. They are gone alright, but the sensation feels more blood circulation related to me.
So, i take it as something is wrong with blood circulation.
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Postby jr5646 » Thu Mar 11, 2010 2:46 am

It would be most interesting to see if a correlation exists between fatigue in those with ms who tested negative for ccsvi... some, but very few are not effected...

Heat intolerance is another one...

Maybe an informal poll here... then again, not too many around who have not found stenosis tho. Maybe the buffalo study gathers this data?

I for one suffer from terrible fatigue and have prior to my dx, but just thought I was lazy and out of shape lol
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Postby costumenastional » Thu Mar 11, 2010 3:03 am

jr5646 wrote:It would be most interesting to see if a correlation exists between fatigue in those with ms who tested negative for ccsvi... some, but very few are not effected...


Good point there. But it might take a while haha

As for heat intolerance, according to my limited perception of things in general, again has nothing to do with degenerated neurons or lesions orelse this effect would be constant. I take it mostly as a reaction of damaged areas to altered blood circulation due to the heat.

Let's hope for some answers at last.
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Postby magoo » Thu Mar 11, 2010 6:05 am

My fatigue and heat intollerance were dramatically improved after treatment. In fact they may just be gone. I haven't had my first "southern summer' yet, so the full benefit will be measured then. I have been in many "heat" situations which would have crippled me before and haven't had any of the reactions I had prior to treatment.
Those two things along with my returned cognitive abilities are the benefit of proper bloodflow, IMO.
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 costumenastional » Thu Mar 11, 2010 6:14 am

Lucky you ...

I am jealous :(
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Postby kc » Thu Mar 11, 2010 6:25 am

sbr,

This an excellent topic. It has always been my worst symptom, although the physical deteriation has climbed as well.
I agree that if neuronal damage was to blame for fatigue, even to blame for physical disabiltiy (100%) it would not get better one day and then worse the next.
A few years ago I went to my neuro because the little toe on my right foot turned blue. Of course this was during the winter time when it is freakin way cold. He thought it had something to do with circulation.
Jk Rowling's invention of the dementors is said to have come from witnessing her mother's ms. It really is a perfect way to describe the fatigue.
I have had people tell me they think they have ms cuz they get tired. Unless you have fatigue, you have no idea. Like not knowing if you can get out of a burning house because you are so fatigued.

I will look up effects of hypoxia within the brain.

Again excellent post.

kc
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Postby ozarkcanoer » Thu Mar 11, 2010 7:20 am

Oh, magoo, I'm soooo glad to hear that about your fatigue and heat intolerance. For months on end I am a zombie, my head burns and I am exhausted. I really can't do anything. I am looking forward to help for these symptoms more than anything.

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Postby tzootsi » Thu Mar 11, 2010 7:29 am

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?'.
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Postby shye » Thu Mar 11, 2010 7:45 am

yes, a great topic.
I am undergoing EDTA chelation therapy--still early days, but am already a bit less tired, and definitely have better color and circulation in feet and hands.
I started this after reading much on CCSVI--(also got some excellent chiropractic work done to release rotated Atlas, and thus end the bone impeding on arteries and veins--again after reading on CCSVI).
CCSVI pointed to altered oxygenation of brain--so knowing the difficulties of getting ultrasound correct, and of angioplasty, searched for alternate ways to get same results.
And these alternate ways are working--i am assuming that my fatigue will lessen further wtih the continued chelation sessions.
Last edited by shye on Thu Mar 11, 2010 7:46 am, edited 1 time in total.
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Postby Vhoenecke » Thu Mar 11, 2010 7:46 am

Montell Williams has said he has no fatigue. He is busy with the drug companies now so he won't comment on CCSVI. Fatigue and heat intolerance(really bad) are the main problems of mine. I feel myself get lower as the heat climbs. If those are the only symptoms that I can be rid of I will be a happy woman. I should say happier. Going to Bulgaria in June no confirmed date yet but I can't wait.

Val :D
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Postby magoo » Thu Mar 11, 2010 7:50 am

I spent the last 4 summers inside and in bed. I was so fatigued by the heat and humidity.
Last Halloween, shortly after treatment, I went out and it was a warm and very humid night. I took my boys out, in heels, dressed up, for 2 hours of walking , and I felt great! My husband nearly fainted, he was so shocked at what I was doing.
As CCSVI moves along, maybe these stmptoms will be eraticated? I hope!
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 Vhoenecke » Thu Mar 11, 2010 8:23 am

Thanks so much for sharing magoo, I am so excited now. If that is the only symptom I get rid of it will be worth it.

Val
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Postby euphoniaa » Thu Mar 11, 2010 8:25 am

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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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 dunkempt » Thu Mar 11, 2010 8:34 am

- Fatigue has been attributed to lot of factors like improper sleep etc but these are speculations at best


I kept my fatigue under control for more than a decade after I got on Clonazepam (Klonopin); it let me sleep properly - without repeated waking from twitching, etc.

Under control, but not gone.

The funny thing was that now and then I would have, say, a long evening when the fatigue was just switched off. I was as mentally quick and physically energetic as I have ever been. And then it would switch back on again. Obviously if I had been able to figure out the conditions that flicked the switch, I would have repeated them, but I never did.

This wasn't pushing myself or running on adrenaline - which would also happen but which I would pay for later; this was just not being sick and tired.

Again this seems more explicable in the CCSVI paradigm - that for whatever reason (posture? relaxed neck muscles?) blood flow was working properly for a short period, and then - back to abnormal.

-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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