DrSclafani ASKS a question

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

Re: Dr Sclafani asks a question

Postby VeeBee » Sat Jan 01, 2011 1:34 am

mazza wrote: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.


You spoke the words of my sis.


Dr. s and thread posters, happy new year. I promised family I wouldnt post about CCSVI this year so ill stick to it.

I can relate to severe fatgue through 400m running. I did more distance but 400m hurt the most. I hit the 40 second mark them it was dead legs. I struggled with the pain afterwards because it was like cramp. The prob was lactic acid.

Dead legs were just like taking sleeping pills but i didnt know what the hell was in them, all i knew was from the top of my thighs and downwards my legs where slow to react.

Fatigue is usually a blockage of the vascular system.

With temple, a quick hit to the temple can ko a boxer or severely daze him, same with below the neck and above the shoulder. both block veins in an instant. Punches to the stomach can kill his legs in later rounds.

I have a family member who suffers fatigue, Ill assume its not lactic acid but its defo a case of not getting enough oxygenated blood to her legs.

cog fog - is disorientation, you realise it and others do too so you feel uncomfortable. Its without a doubt a lack of oxygen to the brain, can see it in MS, selility and ex-stroke people. Prolonged exposure can lead to spacicity, as can the same principle lead to other bodyparts.

wallwalker - Shyness. too embarrased to admit you need help. 1st thing id admid to a doc is im feeling fine but a feeling bit low, nothing to do with my own issues.

purple feet - coldness in the feet, an obstruction in the vascular system in the ankles & possibly upper shin, probably a result of swelling through arthritis. Personally I get the opposite in my feet, totally burning. Hands are naturally blue with cold and painful. Ran 3 miles in the snow barefoor and my feet went white and I couldnt walk for a week, strangely enough, pins and needles feeling.

Fatigue cannot be measured correctly. Everyone is at a different fitness level. Go to docs and feeling fine? 8/10. On a rough day? 3/10.

I know what fatigue is, one is after extreme pressure and the other is medically unexplainable exhausion. Both relate to lack of oxygen, both can be improved with oxygen replacement. Stress also restricts the veins, hense stage fright, taking it to its basic example, a guy no being able to pee in a public toilet.
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Postby eve » Sat Jan 01, 2011 3:18 am

The darkest moment with MS - when my six year old son was sitting on my bed beside me, crying because he ws so hungry and I could not lift a finger just from being so, so tired. Like I'd been washed ashore after being shipwrecked. And there was no one there to help.

Being so tired that nothing got through, like living in a vacuum - only the fact that I was breathing was an indication I still was alive. And that was about the only coherent thought I could produce.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Re: DrSclafani ASKS a question

Postby NHE » Sat Jan 01, 2011 4:15 am

To me, MS is a vicious circle. It makes it hard to do things, therefore I do less. As a result, it becomes even harder to do things I once could do without much difficulty. It is like hanging from the proverbial knot at the end of a rope except that the rope stretches and gets thinner thereby making it easier for it to stretch. I often feel as though I have to fight just to stand still. Like standing in a strong rip tide, you either resist or get washed out to sea. The water is noticeably deeper now.

NHE
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symptoms

Postby Rosegirl » Sat Jan 01, 2011 7:11 am

Dr. Sclafani,

Thank you for collecting this information to pass on to other doctors. Our symptoms are so different from each other, except where they are the same. Will these symptoms be present when we are actually in front of a doctor, and will cog fog prevent us from describing them?

When I was treated in July, the IR had no plans to meet me either before or after the venogram. at least to him, apparently we are parts, not people. If this is standard procedure, how should it be changed?

These are things we never TALK about since there has never before been anyone who could do anything about it. So what was the point of depressing anyone, especially those who care most about us?

Don't let the wry humor some of us use disguise the struggle we face and the hopelessness we have endured -- until CCSVI.

Doctors know they can't work miracles (OK, maybe neurologists haven't gotten the memo, even though their drugs don't help. . .), but CCSVI has changed that. Not every procedure will be that miracle, but the odds are finally working in our favor.

Thank you for adding humanity to the curriculum.
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Postby EJC » Sat Jan 01, 2011 10:15 am

Emma has a finite amount of energy each day, like a battery.

Mostly for her it's 4-5 hours of useful time in which she is able to operate. Once this energy is exahusted that's it, it doesn't matter what she's doing or where she is she has to sleep.

If she tries to push herself too much she pays for it next day, and we all pay for it by being the butt of her anger (frustration).

She was Liberated 27/12/10 - now we start the long road to recovering what we can for her.
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Postby Needled » Sat Jan 01, 2011 10:29 am

Fatigue? It takes me twice as long to do half as much. Then I have to stop, recover, and see if I have enough left to go back at it again. If it's a good day and the next day is clear so I rest, yeah, I'll keep at it. If it's not so good, then it just waits and gets added to the endless "To Do" list.
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Postby bestadmom » Sat Jan 01, 2011 11:50 am

My biggest issue is not being able to move my legs at all. Totally useless. My left hand is weak and I'm a lefty so I can't hold a pen. I can only get out of bed if I have something to pull myself up against. The dog's weight on the blanket helps. When I have to cut my food I look like a neanderthal.

When I'm sitting in my wheelchair, my feet are purple and freezing. When I have them elevated they itch and burn. My feet feel like they are being squeezed really hard and my toes feel like they are being pulled in different directions but they aren't.

Every time I turn my head to the left I get a shock in my left upper arm, up thru my teeth and then down the back of my right leg. Sometimes it feels like there's a torch burning the back of my right leg instead of just a shock.

I worry that I passed this on to my children. They worry too and they are 17 and 13. My 17 year old wants a venogram before she goes to college. My 13 year old has suffered the most because I lost my mobility when she was 11 and she still wanted mommy to do the mother-daughter activities I did with my older daughter. My husband never gets a break.

I work full time because my mind is still sharp and I expend no energy sitting in a weelchair. I consider myself one of the lucky ones.
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Postby pklittle » Sat Jan 01, 2011 1:08 pm

Time management for me has taken on a whole new meaning. I must allocate much, much more time to getting ready to go out, dressing, putting on makeup. Everything takes so much longer to do, as I get so tired and must rest frequently.
If I'm going on a trip, I had better pack a day or two before. No more throwing stuff in the suitcase on the day of travel.
Not much can be done on the spur of the moment. I miss those days when life was fun and spontaneous.
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Re: symptoms

Postby Cece » Sat Jan 01, 2011 1:15 pm

Rosegirl wrote:Don't let the wry humor some of us use disguise the struggle we face and the hopelessness we have endured -- until CCSVI.

In the case of the THEGREEKFROMTHED, it was rye humor....

I relate to what Rosegirl said here, humor is a way of coping. I have an optimistic nature, but when I got down, one way I'd push myself to keep going was to say, "You think this is bad? It'll be worse next year...." If there's humor in that, it's gallows humor.

I can't think how to describe my fatigue. Others have done a good job. This week for example on Monday I had "overdone it" by taking my kids to a playdate. This would not be overdoing for a healthy person. It wasn't until Thursday that I was able to take them out again on an errand and I could tell halfway through that it was not going well and I had to get home asap. When I got home, I hurriedly got snacks on the table for them to eat and declared one of them in charge and collapsed on the couch. In pain, waiting for the extreme fatigue to release.

My fatigue has depth but it also has breadth; there are the extremes that I sometimes hit but the breadth is the constant pushing that I have to do to get nearly anything done, all things that others would take for granted.

It is not just tiredness but a scary ill-feeling. And for all my general wordiness, I have not done it justice here, it is rather indescribable.
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Postby auburntiger » Sat Jan 01, 2011 4:31 pm

[/b]Head Pressure (not a headache)
Vision color dimness
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Postby bluesky63 » Sat Jan 01, 2011 6:46 pm

I apologize if anyone already said this -- I only have a second here and I haven't been online in a while.

In a nutshell -- a fraction of the issues that most people who have advanced disability in multiple areas have learned to live with, ignore, or handle with black humor *every day* would send most people screaming to the emergency room.

But empathy -- that's a tricky thing. When you talk directly to people, and particularly many medical professionals, they have such an ingrained sense that this will never happen to them that they sometimes have a hard time with direct empathy.

So instead ask them to imagine MS happening to someone they care about deeply -- a spouse, or a child. The degree of removal helps. Then ask them to imagine watching that loved one experiencing severe symptoms, then imagine knowing CCSVI could help, then going through this whole process while every day their personal life is slipping by and a cherished daughter is going blind, a wife will wake up in two months without the ability to move her legs, a dear college friend can no longer work and needs help just to put on a sweater and will risk PML and cancer while doctors try to slow down the relentless progression.

Everyone's experience is difference, and everyone's definition of awful is different, but everyone wants to feel better, even if it's only a little. :-)

Maybe the hardest thing I get about dealing with doctors is the humor thing -- they really don't understand that we may be smiling and joking, but things are definitely not all right. But who wants to go in and be all doom and gloom? I would feel like giving up if that were the case.

So they should understand that laughing does not equal OK. In fact, sometimes it is just a big huge lie.

Thanks, and best wishes, and Happy New Year! :-)
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Postby catfreak » Sat Jan 01, 2011 8:57 pm

Hi all, it's been a while since I posted anything.

to Dr Sclafani:

I can say MS tired for me is my husband having to make me get up and go to my desk ( I work from home) when I can hardly move. An sitting at my desk and crying because my brain will not allow me to think in any sort of orderly way. How can I keep a job this way?? When do I give it up and retire or file disability??

Being so much slower than I used to be and wondering if I can keep up the charade any longer. I am good at fooling others but smiling to hide the tears gets harder everyday.

Shoulders burn and feel like a ton of weight is on each side bearing down.

And to quote Auburntiger: Head Pressure!!

Anywhoo, my 2 cents!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Re: DrSclafani ASKS a question

Postby pklittle » Sun Jan 02, 2011 11:02 am

NHE wrote:To me, MS is a vicious circle. It makes it hard to do things, therefore I do less. As a result, it becomes even harder to do things I once could do without much difficulty. It is like hanging from the proverbial knot at the end of a rope except that the rope stretches and gets thinner thereby making it easier for it to stretch. I often feel as though I have to fight just to stand still. Like standing in a strong rip tide, you either resist or get washed out to sea. The water is noticeably deeper now.

NHE


Well said.
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Postby JoyIsMyStrength » Sun Jan 02, 2011 2:04 pm

Pre-diagnosis x20 years:

Dx'd with hypochondria

"you're just hyperventilating" -- 2 different docs told me that's why I had numbness and tingling

First major relapse, so weak I could not lift a fork, neuro told my husband, "Your wife just needs to get back on her horse."

Mother-in-law said she expected me to "buck up."

Now that I'm in a wheelchair, suddenly everyone believes me.
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Postby 1eye » Sun Jan 02, 2011 3:08 pm

Another weird one: somebody else said they have oversensitive hearing. This goes for me too but it is a unique torture: my ears didn't work right. I have times of day (even now, post procedure) that I cannot stand sounds. I have also had ringing for so long I ignore it, and when I was having an attack, sounds like heartbeats loud in my ears, but no rhythm to them. I knew they were not heartbeats because of that, but what were they?

Also, since I have been concerned over musical losses, I stopped being able to hear loud music in tune. In fact, it sounded like it was badly out of tune. It was particularly bad in the bass notes. The people I was with did not hear this, and it ruined a few concerts before I gave up on my ears. I think this has improved since liberation. I have yet to test it with really loud music.

How's that for weird? I have also lost my sense of rhythm, which at one time was quite good, but that is a motor control thing. Handwriting has suffered similarly. Quite illegible.
"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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