symptoms - a list of all CCSVI/'MS' symptoms

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

do you think this collection is possible/a good idea?

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Total votes : 7

symptoms - a list of all CCSVI/'MS' symptoms

Postby 1eye » Fri May 14, 2010 6:42 pm

symptoms:

A list of all your symptoms would be nice. I will start a new topic for that.

First we have to agree on what we should call them. Tell me either if you have ones that are different than the ones below, or make it a complete list for you.

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
muscle fatigue after using them (times get shorter, bad when hot)
energy fatigue (all the time - sit and type a lot)
"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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Great Idea

Postby Squeakycat » Sat May 15, 2010 8:02 pm

We have a number of threads going on this subject so I think it is time to pull them together in a single comprehensive list and survey people on whether the list covers everything and if not, what's missing and then follow that up by a broad survey aimed at measuring the prevalence of various symptoms in a few simple demographic groupings such as type of MS, age, sex, date of MS diagnosis, geographic location.

This could provide a solid baseline for the other questionnaire being discussed, one to list symptoms pre- and post-Liberation and to track changes in them over time.

I've volunteered to throw together a website and the questionnaires unless I hear otherwise.
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