Survey Wish lists for treatment outcomes of CCSVI

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

Survey Wish lists for treatment outcomes of CCSVI

Postby NZer1 » Thu May 13, 2010 4:52 pm

I am wanting to get together a list of things that as individuals we would be wanting as an outcome of CCSVI treatment.
I thought keeping it simple and then using the list as a guide for the development of trails that will be used in the next round of treatments on offer with IRB approved sites.
As we are well aware there are a wide range of symptoms we suffer. The important thing is to get an idea of what is most common and design tests that can measure the subtle differences that treatment creates.
There will be things for some that others do not have, and things that CCSVI treatment will effect with time. The main objective is to identify the most common and measurable.

My list top priority

Trigeminal Neuralgia
Fatigue
Bladder frequency
Balance/leg spasticity
And I nearly forgot cog fog

Please add you list.
Last edited by NZer1 on Thu May 13, 2010 9:19 pm, edited 1 time in total.
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Postby Cece » Thu May 13, 2010 5:16 pm

Great idea, here goes:

Fatigue
Fatigue
Fatigue
foot drop
visual special effects/optic neuritis
memory
word-finding
heat intolerance
super cold feet
neck pain
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Postby Wichita » Thu May 13, 2010 5:31 pm

Here are some inputs from my wife, the MSer in my family:

Bladder retention - this is measurable using ultrasound and measurement of volume when using a self-catheter

Walking / mobility - I think they used time tests to cover a certain distance in a recent drug trial

Numbing / tingling - seems highly subjective but maybe could be tested like an anesthesia doctor tests - apply a force and ask the patient if he feels it.
Choose Liberation.
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Postby Hope66 » Thu May 13, 2010 5:39 pm

I say go big or go home...so I have a single wish...

Halt progression.

be well all,
Hope
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Postby ndwannabe » Thu May 13, 2010 6:26 pm

Fatigue

Leg drag
Leg spasm
Limp
Foot drop

Memory lapses / forgetfulness / word searching

Sensitive bladder

Bad sleep

Heat sensitivity

Sensitivity/ irritability in general - sounds, bright lights, strong smells, touches

Neck spasms
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Postby Onthelake » Thu May 13, 2010 6:31 pm

8 months ago I would have said severe fatigue and lack of balance, constant dizziness, heat intolerance, bladder, could do nothing physically stressful...then I started taking LDN and all that dramatically lessened or disappeared (bladder, heat) last October. It was like a miracle.

Now I am left with tinnitusssssssssssssssssss pretty much all the time, a bit of dizziness in the morning and when I look up, choking on spittle when falling asleep and nearly drowning a few times a month, balance problems periodically, brain fog, word finding periodically and my memory continues to grow worse.

I am hopeful for a trial in Barrie Ontario soon through Sandy MacDonald. He testified to Canadian parliament on May 11, they are working on it....hopefully soon.
Onthelake

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Postby smokey » Thu May 13, 2010 7:34 pm

heat intolerance
visual effects
fatigue
clumsiness
stop progression (1)
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Postby jackiejay » Thu May 13, 2010 7:47 pm

for someone with RRMS but no real palpable symptoms of CCSVI...I would wish for the treatment to halt the build up of iron deposits which is causing damage to the CNS over time.....with the treatment then there should be no more need of IMD's....
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Postby bmk1234 » Thu May 13, 2010 7:54 pm

The headache I have had every day for 8 years.
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Postby grayhairedlover » Thu May 13, 2010 8:08 pm

Constant pain
fatigue
memory loss
I can handle the not walking but these three symptoms are the real downers for me.
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Postby jr5646 » Thu May 13, 2010 9:03 pm

Yes... Stop the attacks!
Shrink and hopefully rid myself of lesions..

I guess if the above happens, all the rest will fall into place, right?

Dare to dream.

I'd certainly welcome any/all of these symptoms GONE in the interim, for sure..

1) Fatigue - I shouldn't have to nap until i'm in my 80's
2) Pissing 15 times per day
3) Vertigo with nausea..
4) Balance.. I much rather drink 20 beers to walk like this :)
5) Strength.. (hand arm legs)
6) Lower back muscle spasms
7) Cog fog.. can't recall names especially..
8 ) Blurred vision / burning
9) Headaches
10) Heat intolerance
11) Emotional liability / Depression
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Postby Algis » Thu May 13, 2010 9:08 pm

Would be very happy to be able to write and use my right arm/hand. If I could occasionally get out of my wheelchair few times a day - even if only to go to the toilets - I would be very, very happy. And if the complete incontinence would resolve I would be infinitely happy...

More than that will be a miracle :?
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Postby JCB » Thu May 13, 2010 9:29 pm

1. fatigue
2. brain fog
3. writing with my right hand (I'm right handed)
4. right foot drop/ dragging

Would I be happy if I stayed where I am and the Progression stopped? of course I would. As stated above though, why not go big?

PPMS '07
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Postby fogdweller » Fri May 14, 2010 9:08 am

leison load
fresh lesions ()i.e. progression)
phychologiocally measurable symptoms (get a good phychologist to check out the tested issues...short term memory, number manipulation, etc.)
Digital dexterity
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Postby sbr487 » Fri May 14, 2010 9:32 am

I am surprised no one said body aches. My initial problem was body pain for almost 10 years. Believe it or not, I think MS has eaten away my muscles, so I don't have it anymore. I have read it somewhere that active muscles will tend to create body ache and once they atrophy, one would not feel it.

Anyway,

1) memory, confusion
2) fatigue
3) gerd

Get rid of these, i am ready to work out the rest ...
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