DrSclafani ASKS a question

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by Cece » Wed Dec 29, 2010 12:46 pm

drsclafani wrote: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
Would the doctors already be used to dealing with cognitive impairment in the elderly? I sometimes feel like I start the day out at age 30 (ok, 35) and end it at age 80. It might be a matter of the doctors knowing to use the same tactics they might use with the elderly? Looking for signs of understanding, slowing down, repeating themselves, being friendlier or more approachable to help the patient to feel safe?

Looking at MS as a patient population, it is diverse and the most immediately noticeable has to be the physical disability. The wheelchairs (or 'chair' for short, as someone asked earlier.) The cognitive and fatigue side of it is so much harder to see.

For me, I might seem like a different patient (engaged, fully understanding) at the start of a lengthy doctor appointment than I do at the end of it (exhausted, brain on a slow blink).

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Post by IHateMS » Wed Dec 29, 2010 3:14 pm

  • intention tremors

    visual startle response...when someone walks up to me, the person appears b4 the sound,,, weird one for me (could it be the nystagmus?)


    'heavy' limbs... like a tree limb weighted down with snow/ice

    sound sensitivity (ex. beeping/paging in hospital... startles me)

    hypersensitive skin - u could put a nail thru my leg w/ no pain... but my cat rubs against my leg and the feeling is unreal

    when i sneeze, my torso has clonus like shaking... first one side, then the other

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Post by 1eye » Wed Dec 29, 2010 3:46 pm

LisaAnn wrote:Hi Dr. Sclafani,

Wall walking-I believe this is simply using the wall to hold yourself up while walking. There is also furniture, counter, people and car walking! Anything to maintain balance! You can experience this easily after a few glasses of wine!
When I was in rehab a physio called this "wall surfing."

I haven't had 'hugs' yet, but along with my myoclonic jerks or spasms or restless legs I have had a weird thing that happens where my left arm jerks and wants to be raised up in the air.

I also get what is sometimes called "lability", sometimes "unwanted laughing or crying", and sometimes "pseudo-bulbar affect". My dad had it as a result of strokes. You get an inappropriately intense emotional response to something like telling a joke or reading a sad newspaper story.

We share some other symptoms with other types of brain damage.
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Post by soapdiva884 » Wed Dec 29, 2010 4:41 pm

What a great thread! John has swallowing issues. Choking on foods and liquids. Alot of throat clearing!
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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Post by newlywed4ever » Wed Dec 29, 2010 5:46 pm

Another symptom not previously mentioned here: lack of libido (and I'm positive everyone can feel empathy for that one!)

My description of cog fog: "firing on 3 cylinders" AND/OR "did I just run through a red light?"

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Post by HFogerty » Wed Dec 29, 2010 5:54 pm

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

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sclafani asks

Post by zinamaria » Wed Dec 29, 2010 7:58 pm

MS 'hugs' for me is like a 'million rubber bands wrapped around my chest'.

If I don't want to say I have MS, I say "I have some physical challenges' so as not to make anyone else uncomfortable.

Overwhelming fatigue the onset of which I never understand and say "Why am I so tired?" than I remember there is no reason, like I worked too hard etc, just unexplainable fatigue because I have MS, the onset of which happens on its own time. Like someone said, one minute I'm walking fine into the grocery store, the next minute I'm using the grocery cart to get to the car...it's that sudden.

Legs feel like a lead paperweights Always the body feeling like a huge burden, heavy, the effort of which is like walking through quicksand (like Sisyphus rolling the rock uphill but not having that brief moment of freedom to watch it roll downhill, just the curse of always rolling it uphill).

Noise sensitivity.
Crowd sensitivity, too much stimulus and I am overwhelmed emotionally and physically.

Emotions most definitely related to body awareness, i.e. Depression and mood swings when I feel lousy in my body, as opposed to feeling great when my body is feeling good.

Heat sensitivity.
Also weather sensitve...don't mind the cold, but I need the sun in the sky or depression and anxiety builds.

Can't remember who said it, but yeah, we are good liars! i.e. would you like a drink with your meal? oh, no thanks, not now (because if I did drink in public I would pee in my pants!) Talk about embarassing.
In other words, trying to 'act' light and breezy when the body feels heavy, and yet who can measure 'feeling' heavy when the issue isn't weight gain?

Self-esteem issues

Thanks for asking and caring Dr. Sclafani. Not only is expressing pain almost wholly impossible, but locating it is even more challenging.


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Post by NotFound » Wed Dec 29, 2010 8:09 pm

Inability to list those symptoms util reading the posts of others and exclaiming "Oh yes! I have THAT!" :oops:

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Post by fogdweller » Wed Dec 29, 2010 8:53 pm

one I have used is that "my legs are shot" because I wear them out in about 15 minutes of exercise or walking up a hill, etc. and it takes a day to get them back.

Also neuropathic pain..generall in afternoon and pm. (tegretol works for me)

bladder distrurbance.. exactly like serious prostate problems, but exam shows a normal prostate.

Wall walking at night and early a.m., and them it gets better, almost no noticable effect. Can't balance without looking (makes washing my face in the shower difficult... close my eyes and lose balance!)

can't balance on one let...can't put on alants without sitting down.

Babinsky reflex backwards. Probably causes problems with each step, may explain why gait is awkward.

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Post by pklittle » Wed Dec 29, 2010 9:20 pm

Pain, pain, pain in my legs sometimes so bad it brings tears to my eyes. It feels like I have run in a marathon, then someone beat my legs with a bat. Often i have a deep muscular aching, burning pain. Legs and back get very weak after 10-15 minutes of pretty much any activity requiring standing/walking.
Fatigue is a huge issue also.
No amount of sleep can make me feel rested and refreshed.

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Post by dan46 » Wed Dec 29, 2010 10:51 pm

lower back pain
hear heart beat when relaxing, very annoying
numb face, hands and feet
tingling face, hands and feet
slow processing of information,
difficulty carrying on conversation at times.
takes so much energy to do anything
Like a hangover that doesn't go away.
wake up exhausted.
creeping crud
impaired vision, double vision, smeared vision, floaters

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Post by blossom » Wed Dec 29, 2010 11:13 pm

please don't take this that it applies to everyone-because it doesn't but i feel there are some it does. and it is a symptom that comes with ms.

i remember like yesterday and it's been nearly 20 yrs., my husband that i was with for 21 yrs. told me that "just because my life was over didn't mean he wasn't entitled to a life." and he was gone. the neuro. i had been seeing asked me where my husband was when i went to see him and i broke down. for a neuro. he was compassionate. he said that sadly he saw that a good bit and more men bail out than women. so, then what, you start fighting the battle of your life standing up for yourself on legs that will no longer support you. but, i'm still here and i am alone.--a side effect of ms and a husband that had no integrity is gone. and sadly, many people that were in my life are gone i guess that is a side effect of being sick too long.

iremember an add that was on tv selling RAID weed killer. the little dandelion was there with his buddies and here comes the Raid. he got sprayed and was wilting and screaming out to his buddies--"what's happening my roots are dieing". i could never watch that add again--i felt like that little dandelion.

the emotional roller coaster and all the painful dibiliating things that come with a long lingering illness like this no "normal person" would or could understand. i refere to it as having a slow stroke. it is a shame but i envy people that drop dead real quick. not their loved ones but you get what i'm saying.

suicide is very high in ms patients. i hope that i would not but it is in there with all the other emotions. i think of it as having an exit plan. in fact, after a recent surgery coming out of recovery because of the stress of it all i could not move anything--the first thought i had was-"oh no," i waited too long. my nose itched i couldn't scratch it, i was in a panic. fortunatly i regained the use of my hand somewhat but i had a few days like that. but, right now the thoughts are way in the back but they are there.

so what does ms change? everything. what symptoms do i have? i would not wish them on my worse enemy.

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Re: ccsvi

Post by HappyPoet » Thu Dec 30, 2010 4:28 am

blossom wrote: so what does ms change? everything. what symptoms do i have? i would not wish them on my worse enemy.
Oh pretty, pretty blossom,
When I stop crying and can see more clearly, I'll come back to finish my post.

EDIT: I think today I need to let my tears speak for me, and I hope everyone, most especially blossom, can understand. Another day I may be strong enough to post a proper reply.

Blossom, please don't forget what I've said many times before... that you're beautiful and bright; that we need you, your words, and your wisdom and your compassion, caring, and courage.
Last edited by HappyPoet on Thu Dec 30, 2010 8:29 am, edited 1 time in total.

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Post by hope410 » Thu Dec 30, 2010 4:37 am

I consider having MS the very same as the aging process... Only expedited, much faster and much younger.

Whereas older people slowly have to adjust to being unable to do the sports or hobbies they used to enjoy when they were younger, and the slow decline of their bodies: walking a little slower, thinking a little slower, eyes or hands that don't work so well... less energy and less bladder control.

We get all this at warp speed. We barely have time to adjust to and accept one set of losses before the next losses set in. We lose our stability because we never know when the cycle of loss will begin or end; as we lose important functions, we can't know in advance if the deterioration will stop or whether it will progress, we don't know if it will be permanent or if it will be temporary. We must wait it out to see how it will turn out. We lose friends and family support along the way because it's a difficult roller coaster to ride, especially when it doesn't end...doesn't end well anyway. At the bottom of each valley is yet another hill to climb. The loss of support only isolates us more and makes life even harder to manage, both physically and emotionally. The cycle continues its negative path.

We see the difficult adjustments that older people go through when they lose important aspects of themself through the normal aging process. Imagine that process on steroids... to much younger people in the prime of their lives. THAT is us and what MS is like, the aging process on speed.

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Post by IHateMS » Thu Dec 30, 2010 5:09 am

one more thing....... once you are labeled with an MS diagnosis...... docs often become dismissive of any problem you have... attributing it to MS.

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