DrSclafani ASKS a question

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

doc asks

Postby zinamaria » Sun Jan 02, 2011 5:24 pm

pk little, I too miss those days of spontaneity, so I would add to the list that 'planning' ahead is tied to almost all of the symptoms described here. No just jumping up and packing a bag in ten minutes to go for a hike or such thing like a two-day car trip etc.
Heck just a trip to the grocery store is a planned event.

Not sure this ties into physical pain, but it is an emotional pain, so I would say that it is grief over what has been lost that often brings on depression, for me. From running marathons to walking a block than home before I feel I have to get on all fours and crawl home.
MS is about Loss, and from Loss comes Grief.

zina
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Postby fogdweller » Sun Jan 02, 2011 5:42 pm

Very important...never ever tell a pwMS that they aren't experiencing a symptom they have described, or that they are imagining it. We have become very sensitive to that.

When I was being diagnosed, (a two year process back before MRI's), I was once told by the head MS neurologist at the Mayo Clinic that I was "paying too much attention to myself" and that there probably wasn't anything that wasn't just in my head.

(when I was finally diagnosed, it was a huge relief and I was able to immediately go of anti-depressants. The MonSter in the closet had a name, al beit a bad name.)
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Postby NZer1 » Sun Jan 02, 2011 8:25 pm

fogdweller wrote:Very important...never ever tell a pwMS that they aren't experiencing a symptom they have described, or that they are imagining it. We have become very sensitive to that.

When I was being diagnosed, (a two year process back before MRI's), I was once told by the head MS neurologist at the Mayo Clinic that I was "paying too much attention to myself" and that there probably wasn't anything that wasn't just in my head.

(when I was finally diagnosed, it was a huge relief and I was able to immediately go of anti-depressants. The MonSter in the closet had a name, al beit a bad name.)


This is a biggie. Very one of us has had this at some time by someone important. Whether it is family or physician.
PwMS know what is happening, we may not be able to describe it well because 'normal' people wouldn't ever have the symptom but it definitely is real.
Why is it that once in a chair people start to believe us? Who would live through these symptoms for the pleasure of being able to tell others, ITS REAL, and ITS HAPPENING.
I told you so doesn't have meaning after a while, just give some relief and belief, please!
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Re: doc asks

Postby mazza » Mon Jan 03, 2011 3:27 am

MS is about Loss, and from Loss comes Grief.

zina[/quote]

So true and there is no consolation that time will help. It's often the reverse.


I don't know whether this has been mentioned before. I have more difficulty walking when I shiver. My weaker left arm and leg result in an odd gait. I wonder whether the circulation is going to the major organs rather than the peripheral vascular system until I've warmed up and stop shivering. I avoid going out at night in winter because of this. My neurologist's comment about my left leg feeling cooler than my right was "maybe it's ccsvi". Sarcasm from a definite naysayer.
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Postby jimmylegs » Mon Jan 03, 2011 6:47 am

sorry for any repetition but i just read the initial request for info... probably too late but just throwing in a couple cents ;) :
*oven mitt hands (stocking and glove neuropathy)
*puffy hands (a feeling of swollen stiffness when the hands don't look swollen really)
*electric shocks, tingling/'carbonated' blood (mostly dt l'hermittes i'd think)
*phantom itch (an uncratchable annoyance - in my case suspected excess b9, confirmed w labwork)
*vaseline glasses (not really something we use to describe ourselves necessarily, but something we discussed once as a way to help non msers get into msers shoes a bit)
*cement legs (this only happens to me when i get my core temperature up to a certain level.. loss of nerve conductivity..?)
*jimmylegs, for that matter!! (sudden, short painless leg spasms or jumps, explained by my neurologist as perhaps an unfelt 'itch' signal getting 'stuck' in the spinal cord)
*i don't have jargon for 'hypersensitive-and-numb-at-the-same-time'
*i also don't have jargon for something similar to the ms hug but more subtle.. when you can't take a full deep breath. perhaps due to some spasticity in the diaphragm?

and of course there are a whole list of additional terms/abbreviations/acronyms we use that aren't our own vernacular... dx, sx, ataxia, spasticity, dysphagia, nystagmus, ON, peripheral neuropathy, vibration sense, position sense, large fibre modality, o-bands (oligoclonal), CNS, BBB, GI, permeability/impermeability, CSF, serum, RBC, LP, post-LP postural headache... &c &c &c...

and that's not even getting into the whole set of jargon related to CCSVI.
Last edited by jimmylegs on Mon Jan 03, 2011 12:10 pm, edited 1 time in total.
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Postby soapdiva884 » Mon Jan 03, 2011 7:33 am

You know just when I thought I knew everything about MS..........I read this thread. Sometimes it is hard to know what John is feeling because he does not always share it with me. He just pushes on through the day until I notice something going on and then I have to ask him. He does not want to burden me with his "issues"!!!

I just want to thank everyone for sharing in this thread, even though everyone has different symptoms-I believe there are so many that are shared amongst MS'ers.

Thank you all for being so honest and not only helping Dr. Sclafani, but helping me too.
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Cece » Mon Jan 03, 2011 11:10 am

soapdiva, for me, when I don't share what I'm going through with my husband, it's not just not wanting to burden him but also wanting him to see me as healthy and attractive!
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Postby jimmylegs » Mon Jan 03, 2011 1:20 pm

to mazza: FYI when too hot or too cold the damaged nerves of an ms patient lose conductivity which affects functionality.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby 1eye » Mon Jan 03, 2011 2:03 pm

The Big Clue is that it happens "suddenly", at a certain temperature. While I think nerve conductivity has something to do with it, it is too easily explained away if we take that as the whole story. Particularly, my (and I expect this is common) balance fails at a certain temperature. I fall. The shower is a place I have to be very careful. If it is body temperature, or only slightly warmer, no problem. Baths are different. The immersion and the heating effect of the water are greater, and who ever gets into a tepid bath? A lukewarm shower is easier to take and easier to control.

I think there are both immediate and longer-lasting effects of core heating, of blood temperature. Try a cold neckerchief. I have one for hot days and it really works. So does immersion of the wrists in cold water. Ask any fireman why. It's more than cold and hot nerves. It's yer blood.

I do believe the Procedure has made me somewhat more heat-tolerant, but it's hard to overcome "twice shy".
"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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Postby Ruthless67 » Mon Jan 03, 2011 5:13 pm

Then there are the dreaded Status-Quo questions. What will the quality of my life be in a few years. I don’t ask myself these questions all the time, but they are always there, lurking. Like it’s been said, some of us have lost our ability to be spontaneous.

Will I have the energy to be able to fix a decent dinner tonight for my family tonight?

Can I make an appointment ahead of time with a Doctor or friend and not have to cancel.

If I agree to go somewhere; will I be able to keep up?

Will there be easy access to a restroom if I go along?

If I over-due it will I pay for it later, and at what physical cost?

When stress hits my life, how will I pay for that, will it trigger yet another round of Optic Neuritis?

And lastly, will I still be married in 10 years, or will the MS Monster continue to chip away at my health and sanity and win the battle. Will my former Princess or Knight in Shinning Armor bail and go off to lick her/his wounds and regain her/his life without me?

I applaud all the wonderful caregiver’s on tims. It warms my heart to read their posts and know that they are in the fight with their partners, children, etc; helping but not being overbearing, listening and truly hearing, learning and sharing all that they can.

I constantly read excerpts from posts to my hubby and so far so good. My greatest hope is that no matter what life throws at us, that we make it through this life as a team.

Tims is definitely a life preserver on many levels in this stormy water.

Lora
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Postby mazza » Mon Jan 03, 2011 5:13 pm

Thanks jimmylegs and 1eye.

I forgot to mention that there is also a difference in skin colour of the weaker left arm and leg compared to the right. I thought this had to do with circulation but who knows?
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Moving in molasses

Postby djurliv » Mon Jan 03, 2011 8:01 pm

My lovely lady, Linda, (age 61 dx 15 years ago) often reported "moving in molasses" in recent years. I quizzed her about it again tonight and she said that it was like being in a pool of cool (not cold) molasses. Movement was possible, but difficult.

Perhaps others have reported something similar in different terms and I missed it.

That symptom pretty much disappeared with her "liberation treatment" on 9/20/2010 and has not reappeared. Other symptoms (spasticity, spasms, food sensitivities, etc) have continued....but walking in molasses is over, and overall pain level is way down.

David
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Postby jozee » Tue Jan 04, 2011 9:28 am

Haven't been here in awhile...I'm finding this thread theraputic.

I experience a disconect between my upper body and my lower body. It feels like there is a piece of the puzzle missing.

Thanks for all that you do Dr. S.

Jozee
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Re: DrSclafani ASKS a question

Postby elliberato » Tue Jan 04, 2011 11:00 am

drsclafani wrote:In preparation for my lecture at ISET on clinical manifestations of CCSVI and MS, i wanted to share with a largely inexperienced audience some of the terminology used by MSers (aka PWMS) to describe the MonSter.

For example
cog fog
ms hugs
wallwalker
a chair
purple feet


I am asking for more such vernacular to describe symptoms and signs of MS with your views of their definition

No rush, by Sunday would be great!

thanks

DrSclafani



little late but here it is.....


tight as a snaredrum (spasticity)
walking boner (again)
frankenstein (referring to walking manner)
one eyed bandit (one eye in hd one in basic cable service)
shit faced (feel drunk with vertigo)
confuscious(just plain confused)
poisoned(feel under seige)
flared(everyhting is just kicking)
heavy duty(feels likea gorilla on my back)
fucked(when shit just hits the fan)
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Postby ozarkcanoer » Tue Jan 04, 2011 11:46 am

I just saw this thread and here is my contribution :

PAIN, FATIGUE, DEPRESSION, ANXIETY....
ISOLATION, SHAME and GUILT :(

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