Question about Chronic Fatigue...

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

Question about Chronic Fatigue...

Postby orion98665 » Tue Mar 15, 2011 4:51 pm

Just curious to know if anybody has been dx with CCSVI and NOT have
symptoms of chronic fatigue..? Wife was dx with ms last June and has
no symptoms of fatigue and is currently in remission. So far she has not
had any relapses since dx.

This coming Monday were off to the Hubbard Foundation for a full
evaluation and I'm really curious to see what they find.


Bob
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chronic fatigue

Postby zinamaria » Tue Mar 15, 2011 6:38 pm

Nope, I have been diagnosed with CCSVI and definitely experience Chronic Fatigue-like symptoms (have never been tested for it though). But this is an interesting question, I think, and wonder if anyone else besides your wife is free from fatigue and at the same time has been diagnosed with CCSVI...hmmm.

Good to hear she does not get this type of often crippling fatigue, though!
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Re: Question about Chronic Fatigue...

Postby cheerleader » Tue Mar 15, 2011 6:52 pm

orion98665 wrote:Just curious to know if anybody has been dx with CCSVI and NOT have
symptoms of chronic fatigue..? Wife was dx with ms last June and has
no symptoms of fatigue and is currently in remission. So far she has not
had any relapses since dx.

This coming Monday were off to the Hubbard Foundation for a full
evaluation and I'm really curious to see what they find.


Bob


My friend BestAdMom has no fatigue at all, and better brain power than me (a healthy person) but she is in a wheelchair and has been diagnosed with CCSVI. Every one is different.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Tue Mar 15, 2011 7:23 pm

I'm curious too, let us know how it goes! My thought is that initially the chronic fatigue might be related to the severity of the jugular blockages (the worse the blockages, the worse the fatigue) but not much evidence beyond my personal experience of having really bad fatigue and really bad jugular stenoses.

edited to add: since she has a MS diagnosis, odds are really really good that she will have CCSVI, I would not worry about that. All the best.
Last edited by Cece on Tue Mar 15, 2011 10:14 pm, edited 1 time in total.
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Re: chronic fatigue

Postby orion98665 » Tue Mar 15, 2011 8:24 pm

zinamaria wrote: But this is an interesting question, I think, and wonder if anyone else besides your wife is free from fatigue and at the same time has been diagnosed with CCSVI...hmmm.

Good to hear she does not get this type of often crippling fatigue, though!



Wife has NOT yet been dx with CCSVI that's why were off to the Hubbard Foundation on Monday. I'm just cerious to see what they find and I'll keep
you posted!
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Re: Question about Chronic Fatigue...

Postby ErikaSlovakia » Wed Mar 16, 2011 1:17 am

orion98665 wrote:Just curious to know if anybody has been dx with CCSVI and NOT have
symptoms of chronic fatigue..? Wife was dx with ms last June and has
no symptoms of fatigue and is currently in remission. ...
Bob

Hi Bob!
Well, you say your wife dx with ms last June.
When I was "starting" with MS 16 years ago I had no fatigue either.
Maybe I was weaker than others but the fatigue was for sure not the same fatigue than for example 8 years after the beginning or now.
I have an MS friend, she cannot walk at all but her fatigue is not as bad as mine. I think everybody has it different.
Good luck!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Fatigue was later on

Postby MarkW » Wed Mar 16, 2011 3:56 am

Fatigue was later on for me (its in my article). I have no idea when restricted veins would have been found in me. I have thought - what if CCSVI was discovered in 2003 (when my fatigue started) would I have recovered and still be working ?
My understanding is that when RRMS develops into SPMS (20-25 years from first episode) most pwMS have vein problems.
The question for pwMS just after first episode/diagnosis is to get de-stenosed now and maybe have to repeat it in a year or so. Otherwise wait until the testing and treatment is fully understood. Horribly that is often a question of money. Can you afford 2 or 3 operations ?

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Algis » Wed Mar 16, 2011 4:24 am

For what it worth:

I've got first a limp; which went very bad; then an incredible fatigue; as "just cant wake up..." for over a year - Then fatigue ceased after my Mitoxantrone serie of injections...

Overall symptoms worsen and drove me tri-plegic.

Since then (2004) I am taking Methotrexate; small Prednisolone (10mg) and LDN (since 2008 - which I think finished to 'kill' the fatigue).


I am in bed about 2300~0030 each day an awake about 0600~0630... Not tired and no nap in the day.

But I spend the day in a wheelchair doing sh*t, so the real fatigue is absent in fact...
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Postby Blaze » Wed Mar 16, 2011 4:30 am

I had fatigue for a few weeks with my first exacerbation in 1984, but then none for a few years. Since 1990, fatigue has continued to dramatically increase and is one of my most severe symptoms.

I have friends who are much more physically disabled than I am, but they have limited or no fatigue. As cheer said, everyone is different.
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Postby PointsNorth » Wed Mar 16, 2011 10:22 am

I too had no fatigue at the time of MS diagnosis. More with time but still intermittant until last 18 months over which time all MS symptoms have worsened. Wouldn't fatigue be one of the presenting symptoms of MS?

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