DrSclafani ASKS a question

[AMcG]

MS Fatigue: Imagine the most exhausted you have ever felt. Just before you start throwing up and losing consciousness.

MS Fatigue: Like a long distance runner who ‘hits the wall’ but I could get there in 30 seconds.

MS Fatigue: So tired even breathing seems too much effort.

This kind of fatigue is not like depression. You are not weighed down with troubles. It is INTENSELY PHYSICAL

[Rosegirl]

Dr. Sclafani,

If you want other doctors to really understand what it's like to have MS, please tell them that many of us have become excellent liars. We invent excuses not to go to family events because we just don't have the strength, but we don't want to tell those who love us how much we suffer. It would break their hearts. It would make them pity us. In an effort to help us, they do everything for us, and the resulting lack of exertion makes us even weaker.

Many of us put on such a good face that people don't actually realize we have a problem -- the "but you look so good!" syndrome.

When I'm sitting down, I can keep up with the best of them, so everyone always sees me that way. We're a deceitful lot because we don't want others to know the pain and tragedy of watching life slip away because we just can't move/think.

There been a lot of talk about the term "liberation" and how it came to be. From the patients' perspective, it's being free to leave the bed, the chair, the room, the house and participate in life. That's what liberation is!

Inspire them with the understanding that they can give a full life back to us and all who love us!

[jak7ham9]

The inability to sweat or handle heat. The feeling of being a limp noodle no energy or strength reduction in all ability to function above aprox 70 degrees. I mean its cold in my house because I actually can walk around a bit if I a make it warmer its wall walking again.
The tightness of spasticity its waxing and waning or in general the variability of many symptoms. Kind of like having arthritis in your whole legs. Feeling like your ready to get up and walk and then it just doesn't work. Feeling like you have cement bags on your legs

[erinc14]

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

How Does MS Feel

Just one example....

MS Symptom--Loss of Feeling in Hands and/or Arms

What You Can do To Understand--Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

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

Sharon

that's good

[jak7ham9]

wow rosegirl you are right about being deceitful. I am fabulous at getting myself there early sitting and looking like everything is peachy. not drinking anything so I don't have to pee. Yes we are very deceitful. But in our defense its no fun to be stared at ,laughed at, or pitied. We all want to do everything ourselves no help!. Frustrating , I hate admitting my weaknesses and being handicapped!

[HappyPoet]

Optic Neuritis (ON) for me means having many vision symptoms which don't show up on any tests. I've had one attack of nystagmus which remitted, but the following ten symptoms are all permanent or permanently recurring:

* Blurry vision - after ten minutes of reading
* Tunnel vision - after ten minutes of reading
* Double vision - after ten minutes of reading
* Loss of color vision
* Loss of peripheral vision
* PAIN in both eyes
* PAIN behind both eyes
* Blinded by the light
* Uhthoff's Syndrome - temporary worsening of vision symptoms when overheated
* Amarosis Fugax - episodes of temporary total blindness related to eye pain -- blindness is caused by rubbing my eyes so hard while sleeping that the supply of oxygen is stopped; recovery of sight takes 2 - 4 hours, but is not guaranteed, of course.

Neuropsychiatric symptoms, the symptoms most patients don't like to talk about...
*Cognitive dysfunction (unrelated to "cogfog")
*Depression
*Suicide ideation
*Bipolar disorder
*Anxiety
*Paranoia - my enemy
*Personality disorders

[Algis]

Thank you rosegirl - Could not say much better

[Blaze]

Energy Crisis (describes my life for the past 26 years!)

[Lyon]

.

[dlb]

Unilateral &/or nocturnal migraines - I get migraines that occur always in the same quadrant & more often than not - during the night or upon waking. Inclining my bed has been a huge benefit & oddly enough, raising head & shoulders to continue sleep has been recommended on migraine sites.... Read that after I discovered IBT here in TIMS!

Also, "Tomato Head"..... a description often used by pwMS to describe the flushed look or tomato face that we often have. People often think I have high blood pressure, when in fact, I have "enviably normal" BP - as often reported to me by healthcare workers, who I expect suspect as well that my BP is high.

Personally, I am much more intolerant of cool weather or environment than heat. When I am cold, my R foot feels numb & achy. I have had cold hands & feet for as long as I can remember.

[hopeful2]

Dr. Sclafani: this isn't vernacular but it may add to your presentation. Proprioception---I often think my foot or leg is somewhere and, when I look down at it, whoops it's somewhere else! For me it's a slight misperception but I know others with MS who have bigger challenges with proprioception.

Patrice

[cheerleader]

Hey Dr. S....
Great thread (per usual.)

"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. Prior to angio, he couldn't keep his eyes open for more than 2 hours at a time. He described his fatigue as the feeling like when someone wakes you up in the middle of the night from a deep sleep. And then you have to move, walk, work, function. Impossible. We knew he couldn't drive anymore after he fell asleep at the wheel. He fell asleep eating once. Movies, forget it.

He took a narcolepsy med called provigil. Serious stuff, and it didn't touch the fatigue.

So, fatigue or lassitude is more than just a "bit tired". Sadly, it's not even measured on the standard EDSS scale. It means you're unable to keep eyes open, needing to lie down all the time. And since angio, it's gone for Jeff. Oxygenation. anyone? Good luck in the talk--
cheer

[Neutralis]

Also: dizzy, dizzy, dizzy.

People think you get dizzy when you change positions, like if you have low blood pressure, but no, you actually wear this dizziness all over your body. Dizzy when I lie down, dizzy when I walk, dizzy even when I am super healthy in any other aspect. Sort of somebody has put on a nasty pair of glasses on your eyes.

I am dizzy 24 hours a day, 7 days a week, four weeks a month and twelve months a year. Like I am sailing on a slow boat to Italy (Ferrara!)

Sometimes I describe it as watching things through a twisting mirror: you know what the picture should look like, but the synthesis you make of it is somehow distorted.

It is as if the world picture comes in patches, and some patches arrive with a certain time lag.

[NZer1]

"But you look so good!"
This would have to be the must degrading comment. Looking good, WTF has looking good got to do with anything?
It is frustrating to the nth degree to try to explain to people what you are going through. There are no words to enable someone else to have a true understanding of MS symptoms. Explain to someone the taste of strawberry when they have never had one!
The other 'issue' we have is the tests! The tests for function of body parts, the tests for walking ability, the eye sight tests, the heat intolerance tests, balance tests, strength tests, nerve conduction tests, the urinary/ bladder tests you name it the 'tests' are only able to measure either function or no function. The bulk of symptoms for MSers are fluctuating in early days and can move and change at will. Its almost as though the tests are to humiliate you rather than help find some relief.
There is no test for symptoms in PwMS that acknowledge the difficulty the disease has created. If you are missing a leg you can 'see' the problem!

Can you measure frustration?

Muscles that don't switch off in a neutral position, they vibrate on and off trying to settle in a neutral, no load place. Buzzing, try and measure that and then acknowledge to the patient how debilitating it is to live that way. The words 'I get that too' only mean something to another PwMS, any one else is automatically discounted as trying to 'pity' you.

You learn what empathy really means, and what integrity really is!

The big ones; 'its all in your head', conversion disorder, age, sex any excuse for a Doctor who is lost or unskilled, make the patient doubt themselves and it will go away!

[NZer1]

If your car has an intermittent fault and you have taken it to the dealership to have it fixed, should you have to pay after they have looked at it several times and not found anything wrong? They may have replaced parts they thought were faulty, should you have to pay for them when they were not the problem. When a technician is not skilled enough to find the problem are you told that?
When you personally have intermittent health faults should you be treated with contempt for having an illness that is common but hard to dx?
Why are diseases only 'interesting' if drugs can change their course? If drugs are not having any effect what can the patient expect as health care?
How can someone be a 'specialist' in MS, when there is no known cause, treatment or hope?
What is an MS Specialist Neuro, are they someone who knows nothing about MS, because no-one knows what MS really is or how to improve the condition?