Survey Wish lists for treatment outcomes of CCSVI

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

Postby Cece » Fri May 14, 2010 11:35 am

Algis wrote:More than that will be a miracle :?

Algis, this is humbling to read...wishing you the best...
"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 May 14, 2010 12:04 pm

Cece wrote:
Algis wrote:More than that will be a miracle :?

Algis, this is humbling to read...wishing you the best...


That's true. He is that unknown face who is always an inspiration to me. We are really lucky to have such mature folks around us.
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Postby Rosegirl » Fri May 14, 2010 4:49 pm

My wish list is
No spasticity in my legs
No footdrop
No bladder issues
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Postby Johnson » Fri May 14, 2010 5:08 pm

I wish that:

Algis will know a miracle
Rici gets the help he needs
costumesnational starts to feel improvement
Livabird throws her walker onto the same heap as her wheelchair
jr... can drink twenty beers and stagger to the toilet 16 times because of, and in spite of the 20 beers.

And, that everyone finds what they seek in this age of discovery. I hope we all know benefit, and that "MS" really does become history (and Yves Savoie, and Mark Freedman, become unemployed).
Last edited by Johnson on Sat May 15, 2010 8:25 pm, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
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Postby annad » Fri May 14, 2010 5:24 pm

Well said, Johnson!

Now that I've stopped laughing . . .

1. Improve walking (can't go far without chair or cane)

2. Fatigue, fatigue, fatigue

I could go on but boy, those would be great. . . . and what Johnson said.
a
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surveys

Postby 1eye » Fri May 14, 2010 5:27 pm

survey

I think;

A real survey should include every symptom everyone can think of. A list of all your symptoms would be nice. I will start a new topic for that. Then we take real surveys using an existing list of symptoms which will include everything listed. There should be surveys for each symptom. Also we need to know how each of these was for each person tested. Whether it was in a state where it 1) progresses 2) comes and goes 3) stable 4) gone.

which of these states it was in a) prior to Liberation
b) after Liberation

If this symptom has ever had complete remission (approx last date, length)
If you have restenosed, what state it was in after restenosis.
If you have a second Liberation, what state it was in after 2nd Liberation.

If enough responses are given, and we can all agree on a name for the symptom, good stats can be collected, even before any trials.

My opinion is there should be a lay person's description of each symptom, which is not the medical description. An official name can be given, but it should be plain English. For instance, trigeminal neuralgia can be clearly described as 'facial pain'.

my list is as follows: (please feel free to reply with your own, or suggest a better name)

unable to walk, wheelchair
unable to play guitar, low grip strength
unable to play guitar, low speed and accuracy
intention tremor, both hands
atrophic calf muscles on left side
cannot lift leg on left
cannot lift left foot (dorsiflection)
cannot lift left toes
tend to fall, especially after bending over
dizzy
sensitive to heat, results in left side paralysis. left had contracts to a fist
occasional urinary incontinence
frequent urinary urgency
disinterested in sex
erectile dysfunction
weakness in most muscles
slowness, absence of 'fast twitching' muscles
vision problems, seeing double on tight side, upwards
speech stilted
swallowing difficult (choke on liquids, have to use straw)
difficulty with low proprioception
numbness on skin of both legs (left worse)
numbness of both hands (left worse)
depression controlled with drugs
spasticity in both legs
twitching, jumping spells when legs alone are hot
occasional memory loss spells
occasional being lost in a familiar place
Last edited by 1eye on Fri May 14, 2010 6:24 pm, edited 1 time in total.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby ozarkcanoer » Fri May 14, 2010 5:45 pm

I should have noticed this post earlier. This is great !!!

1. NO HEADACHES
2. NO FATIGUE
3. NO PAIN
4. I WANT TO BE ABLE TO PAY ATTENTION AGAIN
5. I WANT TO BE ABLE TO READ AGAIN
6. I WANT TO BE ABLE TO THINK AGAIN (is this cog-fog?)
7. DID I MENTION NO HEADACHES
8. TO SLEEP WITHOUT TAKING 3 DIFFERENT DRUGS
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Unwise Thread

Postby MarkW » Sat May 15, 2010 4:00 am

I think this thread gives credence to the anti CCSVI people who say we are creating impossible expectations in pwMS. My hope is simple - slowing or stopping progression, anything elese would be a very welcome bonus.
Kind regards,
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 jackiejay » Sat May 15, 2010 5:58 am

you are absolutely right, MarkW...slowing or halting progression is the goal...
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