Neuro appt soon, question, musing and ADLs

[thornygates]

I have a neuro appt in a few weeks. Things have been bouncing around in my head. I don't have anyone i can talk to that has any understanding of what i'm dealing with.

my last appt. with the neuro, he asked me several times ' what do i need.' it threw me off.  now it is going over and over in my mind. I need to be able to walk better. Have better balance. to keep working. ( to type better so I don't have to keep back spacing. LOL) to make it to the bathroom in time...ok so i haven't told him about this problem. Honestly what can he do about any of it.

I can't afford any more tests. still paying on the last four years. don't guess i'll ever get out of limboland that way but that's just the way it is.

The neuro asks about my ADLs. I tell him getting in and out of tub much less trying to stay standing is a problem. yes, i have just finally decided to get a shower chair and hand sprayer. it feels like defeat. I never thought how my spouse or mom felt when they had to do so.

walking down just a hall makes my legs tighten up and wont let lose till i sit a while and that only works sometimes - or at lest they let up some.  climbing the 9 stairs to my apt is like a mountain. thankfully it has hand rails on both sides i can pull myself up.  Getting up off the floor or ground is near impossible anymore.
fine motor skills drive me nuts with the tremors.  work got new iphones. great a new toy - dang hardest thing to work when one cant point and hit what you aim for. These are ADLs for me... am I wrong?  I tell him and its like talking to the wall.

I know there are many folks a lot worse off then me. I'm grateful for all i have and can do, but yes i get frustrated sometimes.

I hate going to see him. He will ask me to walk across the room, stand with feet together and i fall, now with eyes closed, i make a face and he says he will catch me. touch your nose - yeah right. Turn your hand back and forth fast, i mess it up. Tap your foot fast and i can't do that either.  He says ' thats good' after each thing and its a lie. its not good at all! I always feel like an idiot or failure. How can you not feel that way? Honestly, how do you do it?

I've been trying to think of things i can do to make things easier. trying to find velcro shoes in my size ( and price range) hasn't been possible yet. but putting my shoes on , and off,  takes forever anymore. i have my mom's grabber to get things off the floor but looking down throws me into wobbles lol. it doesn't work so good at getting things out of the dryer so i'm still working on that one.

It is what it is and I live one day at a time and seize the day.  normally i'm not a whiner. sorry. I'm trying to be honest with myself about what i really do need and be realistic.

so i guess the questions are what are ADLs  and shouldn't job related things count too if you are still working?
and how do you not feel  inferior or  damaged when seeing your neuro? How do you keep form that making you upset?

[thornygates]

Lulu,  
no I can't bail on neuro right now because of insurance. There are 2 neurology groups here that deal with MS and the other one doesn't take the insurance I have or rather the coverage plan.

and yes to you both, I'll ask about CIS at my next visit on the 10th.

ty
tg

[sllowe]

I like try your best and leave the rest. Can we apply that to housework, ahahah

I'm sure glad to hear that made you smile. A good friend of mine made me stop the beatings a long time ago - so now I feel it's my duty to recognize it, lol

Oh, and 1 more thing - ask him about CIS nxt time he says he can't dx definite MS.

-shell

[Lulu54]

Hi TG -

You've done a good self-talk therapy session here - you already know we're good listeners.  We are all our own worst critic.

The next go-round with this neuro - if you can't bail and go somewhere else - should be a discussion about clinically isolated syndrome.  If he thinks you have MS but doesn't have the definitive proof, he can at least be treating you for probable MS.  

The FDA recognizes the importances on early treatment in CIS cases.  Hopefully you can convince this doctor, too.

As for the ADLs (activities of daily living for you newbies) - have you approached it as what being ill has taken away?  All of the things you list definitely go on the minus side of the column.  Shame on this doctor for not listening.  

Take care of yourself,
Lulu

[thornygates]

Thanks! Your first line made me smile. I have a couple friends that ask me the same thing about other areas. Thought I'd gotten better about that, but guess not, huh.

Yes i went to the appointment and I will go to the others too. It has just taken me a year to figure out why my BP is always high when i see the neuro but not when i see my GP. your advice is true and good. All i can do is try and its the not getting it right that tells him what is wrong, i guess. Still i will have to practice that attitude. Maybe I need to make it an affirmation. hmmm how would that be....try my best and leave the rest?

I do ask what is going on and the answer is always " that's normal for people with MS" then i say but you haven't given me a diagnosis of MS and he answers " I can't give you a definitive diagnosis" perhaps I need to ask him to clarify that?

Be good to myself...that is a new concept I've been working on this past year. I never could get it while a caregiver. There is progress - honest. LOL  

again ty
tg

[sllowe]

Are you done beating yourself up?

If so, let me just be good to you and say that you've done the right thing here. You went to that appt. despite how it makes you feel when you are there. That's a good thing, right?  One appt. down, and you'll work through the others too.  

Of all people to vent too - we understand. Do not think of these tests of something you have to "pass."  Just have to "try." Do what you can and then when it's over, ask the Dr. what is the matter. Ask what was found and then follow that up with a simply question. Why? Look him in the eye and say why is this going on Dr?  Let him describe.

I'm glad you got to thinking about what you need after that appointment. It creates goals and provides you with clear thoughts you can provide to the Dr. Beamline responses  questions.

Be good to youself, Thornygates. And when you can't come on here like you did and we'll give you a talking to and hopefully make you feel better if even for a few minutes.

ttys,
Shell