This Is MS Multiple Sclerosis Community: Knowledge & Support

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

circulation issues??? contribute to balance and muscle control/strength?

_________________
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

time is brain

for me, the furthest my imagination had stretched was a wheelchair, so when I first came across the idea of Bed MS, that was not a good discovery.

PPMS, RRMS, SPMS, benign MS
the newly diagnosed (be gentle with them, they're in shock)
foot drop (sounds like what happens right before you discover your purple feet are missing)

Here's a new word that's tearing its way into the MS lexicon:

Liberated

It's associated with symptoms that can be confusing to many MSers as they are difficult to reconcile with the usual course of the disease. They are called improvements.

I don't know if others have this, but sometimes I have symptoms which might be considered "sub-clinical", and they are noticeable to me but not necessarily measurable by the neuro. Slight tingling in my fingertips, the slight darkening of the "reds" in my vision from repeated optic neuritis, the slight hypersensitivity to temperature, etc. But for me, sub-clinical symptoms have been annoying.

Also, don't forget "MS fatigue". I know I was glad to have an explanation for those days when it feels like I have lead in my veins, and no energy, then a day or 2 later, I am totally fine.

I have not yet had the CCSVI procedure, as I am technically "benign MS", but benign doesn't mean I don't have any residual problems. For me it's just been 16 years since diagnosis, and aside from the less measurable things like fatigue, some cog fog, some tingling in my fingers, I haven't had clinical worsening of my disease (which I am very thankful for, considering I've had optic neuritis 5 or 6 times, plus an episode of diplopia, on top of some other weird sensory issues). I am hoping that when I do get the procedure, the things like fatigue and cog fog are made better.

Wobblers and wheelers.
Walking like a drunk.

Skin crawling
Insects under the skin
Burning, buzzing, tingling
Vision haze
Dead tired
Heavy limbs

I don't remember that yet, ask me tomorrow

Over did it today I'll pay for that for the next day or two.

Hi Dr. Sclafani,

I will only write about my personal experience with these terms.

MS hugs-I'm pretty sure people are talking about this tight feeling on some part of your body. It's as if you are wearing a girdle or a blood pressure cuff pumped up. I had this for years around my abdomen. It was never painful, just annoying. I think' neurologists call it banding. It feels like a very mild muscle spasm that never goes away.

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!

I'm not sure what-Chair-is referring to.

Anything else?
Lisa

"heavy legs". My legs don't hurt. They just feel like there's a 10 pound weight on my good leg. That bad one feels like it's attached to a rambunctious large puppy.

As for wall walking, when you have any trouble walking, you try to hold on with both hands, so hallways are great. BUT it means you can't carry groceries or laundry basket, so even if you can actually make it to your destination, you won't have what you need when you get there.

This is one of the best takes on MS symptoms that I've seen.

How Does MS Feel

Just one example....


I've shared this with lots of people. I think they start to "get it".

Sharon

Other Examples of Paresthesias
Burning without cause
Itching without reason
A feeling of a vibration or a buzzing or an electrical feeling. I have heard it described in every part of the body, from within the head, down the spine, on the torso or a limb. Many describe it like feeling that they have a cell phone on silent "vibrate" in that area.
Feeling like one is walking on rocks, but the ground is smooth.
The sensation that there is a rock in the shoe.
Feeling like the fingers or toes are crossed.
Feeling like there are insects or something crawling on you.
Feeling like there is urine running down your leg or warm liquid on you someplace else.
Seeing a small dark object scurring through the corner of your sight (the mouse in the house phenomenon)

all spectacular. keep them coming

we have to get the IRs to understand what you deal with every day