DrSclafani ASKS a question

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by sbr487 » Thu Dec 30, 2010 5:10 am

hope410 wrote:I consider having MS the very same as the aging process... Only expedited, much faster and much younger.
I have myself wondered about this many a times and I beg to differ. If you have noticed many elderly folks, they age and some of the functions work less efficiently but they don't complain of pain, level of fatigue as we have. While one system is less than efficient, other one is badly broken :evil:
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

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Post by SandyK » Thu Dec 30, 2010 6:53 pm

HFogerty said it perfectly for me. I can tell you where every bathroom in Kitsap County is!

The tremors are horrible. I won't eat in front of people because of them. I can't even take a sip w/out looking foolish.

A friend of mine describes herself as feeling detached from life. You're a watcher of life not a participant.

Good luck Dr. S. God bless!
Diagnosed 1994, Self EDSS is 6.5

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Post by blossom » Thu Dec 30, 2010 9:57 pm

dr. sclafani, i think that just about every symptom has been mentioned but sadly there are i'm sure some that aren't because even though i have said there really is not much sacred left on my body there are some things it is hard to publicly talk about.

in my earlier post to you i hope it is not taken as a pity seeking post. i and most of us here do not want pity. i can hold my own little pity party privatly when needed.

what i do appreciate is compassion and a doctor that truly listens to his patient. which is a very rare thing. in fact, in 20 yrs. there was only one that think was listening to what i was trying to get across. pretty sad right.
i'm sure there are some out there but i never came across it.

but here on tims there is you and others that are listening and have compassion and an added bonus you all are passionate about helping us.

if the doctors you are talking to can even half feel our pain as you explain and can feel and learn your way of looking at and doing things then i feel there will be some real good soldiers added to help defeat this thing someone decided to call ms. i don't feel this disease is owned by any one group of doctors and the group you will be addressing i hope will see it the same way. the doors have been opened and this is a very exciteing time. only time will tell who and what comes through that door.

good luck and as this new year comes in you have to know from many of us here that what you have contributed in the past and present is giving us all hope for 2011 and futue years. thank you!! and may the yr. 2011 be the best ever for you and your loved ones.

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Post by VeeBee » Thu Dec 30, 2010 10:54 pm

Dr S. Forgive my last post, ive kinda lost the faith in the medical profession over the past year. No offense intended.

I understand bloodflow issues from a practical perspective. I know a blockage in my lower spine caused tingling in the back of my legs right down to my heels. I noticed that a blockage in my forecepts caused a tingling sensation in my wrists and the tips of my fingers. Where I was getting the sharp pains was the source of my pain and where I found heavy pulsations.

My blockages fluctuate but I could easily pinpoint the source at a particular moment. I dont have ms but a family member does. I'd assume I would show positive for ccsvi but I think that would fluctuate.

Im not anti CCSVI because i think there's a lot to it. I have an extended sports background and detailed food, colds, injuries, etc since i was 12. I understand you are a vascular surgeon which is cool, I come from a different perspective, dr embry & co do nutrition which affects veins, I've struggled in competition because my veins wern't getting enough oxygen to my bodyparts.

Im sure we all want positive results. I get hyper stressed reading medical opinions because my first language is english.

I fully believe the vascular system can be adressed naturally, if not, its similar to scar tissue which can possibly be corrected. First time in 3 years I've felt somewhat healthy. CCSVI taught me that.

My question is, do you check the source of the sharp pains and follow the route of the vein?

If I have ccsvi i feel it at the back of the neck, behind the ears and the front of the head around the temple area and an inch forward.

Just curious what you think?

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Post by jgkarob » Fri Dec 31, 2010 1:59 am

Dear Dr Sclafani,
How about this as a fatigue description?
A mother walking her kids to school. Monday, everyone walks at the same pace. The trip home for the mum is a bit slower. Mum rests.
Walks back to school. Picks up kids, mum has to hold hands with six year old to keep herself moving.
Legs don't want to move, but the mother keeps going, even though after 10 minutes it feels like a marathon runner has hit the 'wall'.
Mum prepares meal, but feels like a person who has had a few drinks. Brain isn't working logically, but feels like it's moving a high speed.

By Wednesday, the mum has to ask someone else to walk the kids and pick them up. She just can't do it.
Walking for five minutes outdoors makes her feel completely drunk, focus has gone, balance is dreadful, spatial awareness non-existant.

This was me. Now my kids are all grown up and I have moved to northwest Spain, where those fatigue symptoms are rare. Why? I just don't know, but I think that humidity plays a part.
I stopped eating gluten and pulses as well. My nerve pain is far worse if I eat bread for more than two days. Why? Maybe I have mild coeliac ataxia, I just don't know.

Another symptom that happens now is that if I'm stressed, I lose all contact with my arms and legs. It's as though they are disconnected from my conscious self.
I can't move them at will - but can move them if I'm push-started!
Last time this happened, I actually couldn't speak for an hour.

I could work, but can't as by the third day, I've run out of energy by then.
I consider myself lucky. I can walk, think and look normal.
My nerve pain without Amitriptyline is like being wired up to a car battery.
I still consider myself lucky though.
A recent MRI scan showed that my MS is non-progressive, but still RRMS. I only get lesions when I relapse. I take Rebif, (for 10 years) which works for me, as it has slowed/stopped the relapses.

I hope this helps to illustrate my life with MS.
You have written that there is no correlation between hypertension and MS.
My first relapse in 1993 involved an attack of autonomic dysreflexia. My BP soared to 260/160 (ish). I almost died and it has left me with labile hypertension, controlled by three drugs.
Is this a sign of CCSVI?
I can't get tested as we just don't have the money, but I'm willing to wait until the picture becomes clearer.
thanks for asking,

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Post by Rosegirl » Fri Dec 31, 2010 5:58 am

For some of us, symptoms come and go within a few minutes. There's no pattern, stuff just happens. There's no point in calling a doctor for an appt because whatever nonsense is going on will be gone before you can get through to make an appt. Or it won't be gone.

This loss of control is insidious. Will today be a day when I can't walk, or will it just be part of the day, or will I walk fine all day? Will today be a day when everything works except the bladder that just wants to act up and interrupt every train of thought.

Maybe today, I can't get to the other side of the room to open the blinds, so I sit in a dim room that reminds me of a funeral parlor. Depression, anyone?

Or today every step is 1. hold on with right hand, 2. grab something with left hand, 3. move one foot 4. shift balance, repeat 1-4. It takes so much concentration just to get across a room that you forget why you wanted to go there. And that's without cog fog.

And so we become increasingly isolated. The world narrows down to your home, then a room and then a chair. Who wants to live like that?

Of course, not all pwMS have symptoms like this, but for those of us who do, keep studying VALVES!

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Post by Kleiner » Fri Dec 31, 2010 6:44 am

Dr. S.

For me the big thing is how my issues impact the important people in my life. I know that when I am having a bad day my patience level with my children is very low, where the simplest little thing will set me off. This is not fair to my children and I know it, but sometimes this terrible disease takes over all rational thought. It also creates all types of hysterical thoughts. I am forever wondering if I will be able to walk my 2 year old daughter down the aisle when the time comes, or if I'll be able to coach my son's baseball team even 5 years down the road. These are horrible thoughts for a 35 year-old to have to live with and no matter how positive I try and be these thoughts continuously creep back into my head. For me, the mental aspect is just as difficult as dealing with any of the physical issues that come along with MS. I can deal with what it does to me but not how it affects the ones I love.

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Post by RuSmolikova » Fri Dec 31, 2010 8:08 am

cheerleader wrote:"But you look so good!"
"I know how you feel, I'm tired too!"
Jeff heard both of these comments from "helpful friends" all the time. He hated it. (...) So, fatigue or lassitude is more than just a "bit tired".
Thank you, Joan!
I thaught it was an unadvantage of the Czech language that we could not describe fatique properly, since we have the only word for it in our country. I always said to myself: "Lucky people in the English speaking countries, they can use fatique (typical for MS) and usual tiredness and everybody see the difference."
Now - thanks you - I see that here, in the Us and perhaps anywhere over the world exists the same probleme: how to describe MS fatique to the healthy people... Even physicians don´t understand the difference...
I found this description very helpful:
"Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. "

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Post by IHateMS » Fri Dec 31, 2010 10:29 am

this always comes to mind.....

The spirit is willing, but the flesh is weak

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Re: ccsvi

Post by HappyPoet » Fri Dec 31, 2010 10:48 am

blossom wrote: in my earlier post to you i hope it is not taken as a pity seeking post. i and most of us here do not want pity. i can hold my own little pity party privatly when needed.
Blossom, with all honesty and from my heart to yours, my tears of yesterday were really for me, and I'm sorry my words came out wrong because, quite honestly, your words rang true to thoughts of mine of late, a mood of blue... of worrying about when, not if, my husband of 25 years will leave me. Talk about paranoia. But this fear is not just my paranoia talking -- this fear is also partly my "MS reality" crying rare tears of self-pity.

Sometimes, when I'm not strong, self-pity has a way of sneaking out from inside the little box in the back of my mind where I keep my self-pity hidden, along with a few other emotions and feelings. You are right about most of us not wanting pity, not any kind of pity, and these words of yours give me just the nudge I needed. So tears of blue no more. And back on track now. Just in time for a new year.

Thank you very much, pretty blossom, and Happy New Year!

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Post by Ruthless67 » Fri Dec 31, 2010 1:50 pm

Two descriptions of walking & balance issues

Walking now is like making my lumbered way over the soft sand down to the ocean’s edge with the firmer wet sand, only to walk into thigh high water making it even more difficult to move forward and then along comes a wave to make it difficult to even stand there.

Also on “dry land” I feel like one of those blow up clown-like punching dolls, the ones with the weighted and rounded bottom. Even though the bottoms of my feet are “normal” to look at, they feel uneven, or pillowed, like the bottoms are rounded and weighted, just like the doll and I “roll” as I walk, balance issues are awful. In crowded situations I feel even more awkward and constantly seem to be saying excuse me and sorry as I accidentally brush against people.

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Post by Ruthless67 » Fri Dec 31, 2010 1:59 pm

Hfogerty -
“Bathroomidis: The unrelenting need to NEVER pass a restroom without a visit. I will not miss that -- EVER”

I absolutely cannot accept an invitation to go and do anything without bringing the availability of restroom access into the equation. Even though I’m ambulatory and “look good”.

Fogdweller -
“Can't balance without looking (makes washing my face in the shower difficult... close my eyes and lose balance!)”
That is me too, I usually spread my feet wide and “anchor” them to the side walls before I shut my eyes to wash my face or hair in the shower.

Hope410 -
“THAT is us and what MS is like, the aging process on warp speed.”

My 90+ year old mother-in-law puts me to shame!!! :oops: She has more energy, cognitive function & agility then I. Oh, to just be aging gracefully, lol. :lol:


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Post by NotFound » Fri Dec 31, 2010 4:14 pm

I somewhat agree with the accelerated aging notion.

I do feel like I aged about 30+ years since the onset of MS (3 years ago) - shortness of breath when performing even the slight activity, bad memory, bad sleep, incontinence, aches and pains - lots of this comes when you get older.

But not when you get THREE years older.

At 37 I could be mistaken for a 28 yo.

Now, at 40, if you follow me throughout the day I could be mistaken for a 70 yo.

Actually I bet most of 70 year olds will kick my butt (figuratively speaking).

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Post by Brainteaser » Fri Dec 31, 2010 4:55 pm

I think the term for the MSer's shrinking world is 'homeostasis'. It's like being in prison and your cell is getting smaller and smaller.

Where you IR guys are going to help - think Shawshank Redemption where he emerges from the drain! :)

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Dr Sclafani asks a question

Post by mazza » Fri Dec 31, 2010 10:38 pm

Living life as if there is a Damocles sword over your head.

Fear that you have passed this on to your children.

Feeling betrayed by your body.

Having to concentrate on each step otherwise you trip over your own feet.

Even on a good day knowing you are still on that rollercoaster ride of uncertainty.

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