DrSclafani ASKS a question

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

Postby VeeBee » Tue Dec 28, 2010 7:07 pm

drsclafani wrote: MSers (aka PWMS) to describe the MonSter.
DrSclafani


Explain that approx 30% don't see any benefit.
Explain that re-stentosis happens at least 50% of the time over a period of a year.
Explain that this service cost a considerable amount of money for odds the bookies would laugh at.
Explain that a high % of those who had the treatment actually work within the industry.

Please dont call this a monster when the stats dont match, excluding facebook spam.

Dr S, no offense but the gun has jumped. A monster is someone who sells a dream only to show a marketer at the end of the rainbow.

Hard facts.

drsclafani wrote:
For example
cog fog
ms hugs
wallwalker
a chair
purple feet




numbness & purple feet are the vascular theory. Cog fog spells out a lack of oxygen to the brain. MS Hugs? Save that for the charity lovers.

drsclafani wrote: MSers (aka PWMS) to describe the MonSter.
DrSclafani


Dr S, please rephrase the monster.

You can be a fairy godmother if you make a wish to the make a wish foundation.

Dr S., prove yourself & your set for life.

My question is, why is charity a one way street? & who are the monsters?
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Postby Cece » Tue Dec 28, 2010 7:14 pm

VeeBee, we are talking about this specific presentation that he will be making at ISET, I believe:
9:00 AM Clinical Evaluation of MS Patients
Speaker: Salvatore J.A. Sclafani, M.D.

Not much of what you just said would be appropriate to the clinical evaluation of MS patients.

To the list I'd add:
waking up tired
back when I had babies, having arms that were too heavy so that it was painful to hold my own baby
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Postby VeeBee » Tue Dec 28, 2010 7:18 pm

Cece wrote:Not much of what you just said would be appropriate to the clinical evaluation of MS patients.


Monster?

Who's selling what? Appropriate? Forum talk?
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Postby David1949 » Tue Dec 28, 2010 7:24 pm

I don't know a vernacular term for it but L'Hermitte Sign is a common problem for MSers.

It is my great hope that one day the term for MSers will be ex-MSers or better yet; "healthy normals".
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Postby David1949 » Tue Dec 28, 2010 7:40 pm

VeeBee get a life will you!

With Liberation you get a chance of getting your life back, maybe a 30% chance of a big improvement, a 30% chance or some improvement, a 30% chance of no improvement and maybe a 10 % chance of getting worse. Without Liberation you get 0% chance of getting your life back and your future will likely be wheelchair, then bed, then dead. You can spend far more on MS drugs than on Liberation. And with the drugs you get no chance of a recovery.
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Postby garyak » Tue Dec 28, 2010 7:52 pm

heat intolerance, excersion fatigue
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Postby eric593 » Tue Dec 28, 2010 8:08 pm

VeeBee, I think the Doctor is looking for other colloquialisms that MSer's use, like many call MS the "MonSter", or the banding an MS "hug", etc.

He's just looking for the shorthand language we develop to describe our disease, that's all. I'm sure for those unfamiliar, it makes no sense. He wants to explain "our language" to an unfamiliar audience.

I describe my fatigue what "healthy" people might feel if they had been up for 3 days straight. It's not something a cup of coffee is going to touch, except that I'd be jittery...and exhausted.
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Postby drsclafani » Tue Dec 28, 2010 8:34 pm

VeeBee wrote:
drsclafani wrote: MSers (aka PWMS) to describe the MonSter.
DrSclafani


Explain that approx 30% don't see any benefit.
Explain that re-stentosis happens at least 50% of the time over a period of a year.
Explain that this service cost a considerable amount of money for odds the bookies would laugh at.
Explain that a high % of those who had the treatment actually work within the industry.

Please dont call this a monster when the stats dont match, excluding facebook spam.

Dr S, no offense but the gun has jumped. A monster is someone who sells a dream only to show a marketer at the end of the rainbow.

Hard facts.

drsclafani wrote:
For example
cog fog
ms hugs
wallwalker
a chair
purple feet




numbness & purple feet are the vascular theory. Cog fog spells out a lack of oxygen to the brain. MS Hugs? Save that for the charity lovers.

drsclafani wrote: MSers (aka PWMS) to describe the MonSter.
DrSclafani


Dr S, please rephrase the monster.

You can be a fairy godmother if you make a wish to the make a wish foundation.

Dr S., prove yourself & your set for life.

My question is, why is charity a one way street? & who are the monsters?
VeeBee
i am sorry you take offense at my request. I want to teach doctors, who might try to perfect this technique, empathy for patients. if i tell them at my meeting that patients have cognnitive impairment, they will have a blank look. if i tell them that a patient is insecure about what is happening because they are slightly (or more) c0nfused, some will have empathy for that time when they were lost and afraid

do you understand, that we are trying to win over doctors who might have something to offer.

i am sorry if you are offended by me, but in my heart i am doing a good thing

try to let the anger go away for a minute and feel the caring
Last edited by drsclafani on Tue Dec 28, 2010 10:11 pm, edited 1 time in total.
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Postby drsclafani » Tue Dec 28, 2010 8:38 pm

hold the focus, teach me more
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Re: DrSclafani ASKS a question

Postby HappyPoet » Tue Dec 28, 2010 9:22 pm

VeeBee wrote:MS Hugs? Save that for the charity lovers.
I don't understand this comment (see below). I promise you that Dr. Sclafani is a phenomenal doctor who has proven time and again that he's not out to take advantage of any of us; in fact, quite the opposite is true -- Dr. Sclafani wants to help us, actually help us, and he's passing up his golden retirement to do just that while taking a cut in pay. So let's please allow him to learn all he can about pwMS...

MS Zombie = narcoleptic insomniac.

MS hugs sometimes require IBT (intrathecal Baclofen therapy) when an attack is both motor and sensory -- treatment is extremely difficult in this situation.

At its worst, due to the MS hug, my torso randomly feels like 1) Two 20' sharks, one on each side of my body, are biting and grinding my torso in half, 2) A knife is repeatedly stabbing me to death up under both sides of the front of my rib cage, 3) A guillotine is repeatedly slicing my body in half, or 4) An invisible force is squeezing me to death.

This torso spasticity and pain, which make it difficult, and sometimes impossible, to hold myself upright, are why I'll soon be having the IBT pump implanted in my spine, and I'm actually looking forward to having my pain control be much more consistent and being able to take much less Baclofen, methadone, Oxycontin, and Lyrica.

Correlation is to a growing "longitudinal" lesion covering five cord segments, T5-T9 -- I find it strange that no Azygos stenosis was found on venography. Between all my ribs, the intercostal muscles are now affected giving me a "complete" MS hug that is never-ending and always changing.

The "MS hug" is definitely the most euphemistic term I've ever come across.

Edit: 50% of my MS hug has been reduced through chiro, but the remaining 50% is still too much for me to handle without heavy pain control, so I'll be putting some hope into the IBT pump and another liberation to double-check my Azygos vein with IVUS.
Last edited by HappyPoet on Wed Dec 29, 2010 3:07 pm, edited 1 time in total.
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Postby formyruca » Tue Dec 28, 2010 9:29 pm

Tinnitus, ringing and clicking... argh!!
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Postby elyse_peace » Tue Dec 28, 2010 10:34 pm

I'm not drunk, I have MS.
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Postby Robnl » Wed Dec 29, 2010 1:41 am

My 2 cents:

- missingfeet - where are you? (not feeling how you 'positioned' your feet)
- 'telephone/doorbell is ringingFREEZE (reaction to unexpected situations)
- Thoughtwandering - thinking abput something and forgettiing the subject


Robert
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Postby AMcG » Wed Dec 29, 2010 2:21 am

Beginning of Cog Fog : being continually startled – like someone continually pressing a reset key in my head every second or two.

Then everything slurred: ‘Slurred speech’ ‘Slurred sight’ ‘Slurred hearing’ ‘Slurred thinking’”

Visual impairment: Couldn’t judge distances. If someone approached to within 2 foot started to go rigid expecting a collision. Depth perception of a three ‘D’ scene was almost absent. Something a mile away didn’t look much further than 12 foot.

Paraesthesia: Left leg always felt twisted so that my left foot pointed to my left when I could see it was pointing straight ahead.
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MS symptoms

Postby RuSmolikova » Wed Dec 29, 2010 2:29 am

I´d like to mention my personal experience (typical for some of my exacerbations):
inchworm - my hand is laying on the surface - finger tips touch the surface - and the forefinger suddenly starts to move backwards - like an inchworm...
ice can - I feel my legs like standing in a barrel full of ice cubes (but they are of normal temperature) - it is really strange to have a chilblains while taking sunbath on the beach... :wink:
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