How do I feel
 

Hi guys,
Need some input, going to a appt. tomarrow, to get evaluated for my symptoms. I have trouble describing all my symptoms, so they are suppose to watch me for 5 hours and they are going to describe the trouble I have in my daily life and work. It was the Dr.'s Idea. She thinks the reason they won't diagnose me besides my brain lesions all over the place, is i am not describing exactly what is going on with myself. First of all I have trouble thinking.......
But the drunken dizziness, feeling like I'm going to fall over all the time, is not clear enough. Feeling like I can't walk in open spaces, without holding onto something. Besides just flat out falling down in front of them, just doesn't let them know I am serious.. So Frustrating!! Any ideas or how I can describe anything?
Deb

Your replys
 

Just want everyone to know, I really appreciate your comments and replys, It means a lot to me!

It's so hard to try and describe symptoms to someone else. I've tried before and somehow it just doesn't quite express how severe some of them really are.

When I've tried to explain my balance issues to my family I've often said it "feels like I've had one too many drinks" or "I feel tipsy". Another way I've described my off-balance sensations is that it's like walking across a swinging bridge. After you're off there's that sensation of movement when there is none. I'm not exactly dizzy (tho some would argue that! :rolleyes:) but just feel off balance.

My Optic Neuritis can be described as trying to look through waxed paper or having hair hanging in front of my eye.

I hope you are able to show them some of your symptoms while you're there. You almost need someone to follow you around with a video recorder all day for them to get a glimpse of "a day in the life of MS".

I'm sure others will chime in with their descriptions, too. :)

Deb, a good MS spec Neuro, worth his salt, doesn't need explanations of sx...He knows from the lesion placements on your MRIs and the other tests he/she preforms. Telling them how and what you feel, should just be icing on the cake, if they know what they're doing.

If there are no lesions and no protien in your spinal fluid, well, they are scientists, soooooo, it must be stress, anxiety, histeria or hypochondria.:rolleyes:

Hang in there and be sure they treat your SX with appropriate meds..:hug:

Hi Deb,
Before I go to my MS Neuro, I type a note of the symptoms I have now, and then list the ones that have gone away. And lastly, I list the three most troubling ones that I feel are my worst and label that as such.

She usually addresses them first. Not all the sensory problems, but the biggies, like my fatigue or burning legs and feet.

They don't want a too long page or rambling, for some reason, I do make it a a bit of a long page though :D, and hand it to the Neuro as soon as I sit in the exam room.

She prefers to read it, so do I. I have the same copy in my hands to refer to. In moments, with her smart brain, she reads it quickly, and then we discuss it.

She gives me an exam for the areas that are my most concern, and then the other Neuro exam regulars, like the pin test for numbness, etc.

I can write on paper better than I can try to sit and mention my concerns. It is faster too for both of us. She takes her own notes and keeps mine for future reference. On the bottom is the meds I need a script for so I don't forget.

To describe in one line how you are feeling is hard, but in can be done.

Example: I walk drunk-like, and lose my balance, especially in wide open spaces, if I don't hold on to something, I fall over.

That line says many things to your doctor.

Or another: I am dizzy and have trouble thinking. I can't multitask or find the right words to use.

Short and sweet, and to the point, is the most effective way to describe symptoms. Try to combine them in one sentence or they get bored reading a bunch of vague descriptions. Just tell it, or write it, like it feels to you.

Good luck tomorrow Deb. In my first years I had this problem, until I noticed how some Neuro's skipped over many on my list because they were not precise enough.

I hope my examples help you.:)

I don't understand. Who is going to watch you, the doctors office or family? Either way if you have a bunch of lesions why on earth do they need to "watch" you? I agree a simple explanation is all that should be needed. Notes or a journal of symptoms is usually the preferred item to bring to an appointment. Jim has never been "watched" when diagnosed. Is this something new?

Either way, good luck to you and if this neuro still isn't sure, I think you might want to consider a second opinion.

here is what you do: Show up with a bottle of scotch, one high heeled shoe, one lead boot, and a pair of control top panty hose. Make doc drink whole bottle of scotch and dress him up so that he can get the general idea of what it is like. THEN, spin in around 50 times really fast and throw on an eye patch for good measure and ask him to walk 25 feet. I think he might get it by then.

I had/have a terrible neuro specialist who would never 'get' my descriptions of sensations. He'd argue and question me.
'Well what do you mean by numb?'
'So the left of your face is slow and heavy? What do you mean?'
'How can something "feel colder than cold"?'

and on it went. Whatever I said, he'd question it.

Gave me an MRI and diagnosis within the space of an hour, but questions all my descriptions. I hate him.

If he asked me to come in and be watched, i'd tell him where to go !!!!!!!!
Tell him to go look at the scans and be a doctor. Not watch you for things that you can tell him.
Sounds barking mad to me !!

Leggz - Great idea! I'm a therapist - and when I was in grad school, for our class on working with the elderly population, they had us do an exercise similar to that. Also included putting on a pair of glasses (with a really messed up prescription) that had vaseline rubbed all over the lenses! It was definitely interesting and put things in perspective for us youngens.

:)

We had to walk with frozen peas in our socks and drink coffee with thickener in. One lump or two. Yuck