Multiple Sclerosis (MS) Support Group

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/ Multiple Sclerosis (MS) Support Group

neuro appt.

MelissaJo
MelissaJo
Ok, this post is a bit of a two parter, i guess.

First, I have my first neuro appt. next week. this is pretty exciting considering the original appt was supposed to be in july, a wonderful 6 months after being diagnosed. so, i'm throwing this out to the experts, what kind of questions should i be asking? i mean, i know the obvious ones, but i don't know that much about treatment and want to make sure i'm asking the rights things.

the second question might be a little more difficult to answer, unless you know my mother. my parents are great. your typical supportive, caring, sweet people. i've been living on my own for 7 years, or more, and am pretty independent. suddenly, having MS turns me back into a kid where my mom is planning on coming to my appt with me. i won't lie, i really don't want her to. it just feels like something i need to do on my own. but, how do i tell her this without hurting her delicate mom type feelings? walking into a new doctors office with my parents in tow is going to make me feel a little silly, and stressed because i'm worried she'll cry. and if i see her cry, i'll cry. i can't understand her feelings, as i'm not a mother, but she can't understand mine, as i'm the MS kid. so, any advice?

*note: i KNOW how lucky i am to have amazing parents that love me this much, so please no grief about how i'm being mean. i already feel mean enough.
AusSue
AusSue
To the first part of the question make sure you ask about the different drugs available, why the Dr is suggesting one over another (if he does) & how do you access support i you have any troubles/side effects from the injection - remembering that it will be out of office hours probably.As for other questions, whatever you want to know ask, find out from your local ms society if you need a letter from neuro stating that you have ms so that you can join, I needed that. Also find out if you are eligible for any assistance once dx depending on your wrrk.lifestyle & how ms effects you. The Dr wont be able to predict the course of the disease but may be able to refer to local resources for some physio to keep your muscle strength up too. Ask if there are any other tests you need to have.

As for your Mum wanting to go into the Dr surgery for you I can understand you appreciate her support but want to go in yourself so that you dont have to worry about her. Best I can think of is to say you appreciate the offer, could they accompany you to the office but you will see the Dr alone & tell them about it afterwards. Thats the only idea I can think of.
Good luck & take a notebook & pen to write down what he says too.
deleted_user
deleted_user
I can really give you any advice on what to ask. they will explain all the medications to you as well they will give you videos and literature to watch and read so you can make a decision for yourself. But for the second part I agree with your mom. I was engaged when I was diagnosed and I still took my mom with me to my first appt. for a couple reasons. 1)I figure the more my loved ones know, the less scared they will be. 2)The more support you can get the better, and most importantley (to me any way)everything was so new to me I wanted to make sure I did not miss anything and she might think of stuff that you won't. But that is just me. Hope every7thing works out.
CASMIRA
CASMIRA
ummmm....i know i would be happy to have my mom there with me if she were still living....don't sweat the small stuff and remember it's all small stuff!
deleted_user
deleted_user
I can understand your urge for independance, but your mom's wish to come may be a little bit for her too. She may have questions to ask, and want to learn things.
One thing I have read a lot is that, if you can take someone with you to appointments, that's great. It serves 2 purposes, 1) it lets the doc know you have a good support system, which in turn gives yourself the image of being more reliable in your complaints, and 2) acts as a secondary memory incase you suffer from an information overload you have someone else there to help fill in anything you may have missed.

You also need to do what's best for you. I know I'd bring my husband in a heartbeat, but that's because he makes me (they always throw some weird cancer threat at me when I go in alone...lol, luckily, every time it's been a doctor over reacting, but needless to say, he doesn't let me go in alone anymore).

Good Luck, and do whatever works best for you!

Christine
deleted_user
deleted_user
Good luck and remember, if you dont like what you hear, go for another opinion.
MelissaJo
MelissaJo
well, my boyfriend is going to come with my already, because i know he'll be good at remembering things i may not, and he's amazing support. so, it's not that i would be going in solo.

and i understand my moms need to come in. i think she needs to hear what they have to say. the thing that stresses me out is that they live over two hours away from me, and refuse to drive in the city. so, it's stressful for me to even get them here. but, i'll do what i need to do i guess.

thanks for the advice guys!
deleted_user
deleted_user
As a parent, I'm always afraid my kids will hide things from me. To help offset that, I'm trying not to hide any MS stuff from them. I evens showed them teh MRI reports. Fortunately for me, my MS is mild. I do nto know what I would tell them if it were otherwise. Anyway, I think that is the biggest fear; that is, that you will hide stuff from them. Maybe a copy of _Multiple Sclerosis for Dummies_ would help.. Good luck to you and your parents and your boyfriend!! :o)
deleted_user
deleted_user
My mom comes to my appts, she's my ride! LOL No, but seriously, you are 26 and if you want her there great if you don't that is your decision. My Mom comes into some of my appt and waits in the waiting rooms for others. She always asks if I want her to come in, that's very respectful, I think. I would talk to your Mom. Just let her know that you really want like having her support, but that you want to do this one on your own. Keep in mind she's very worried about you, I have a daughter who is very ill and I also know what your Mom is feeling. It's a difficult postition. Keep her informed, she'll feel better. Best of luck! M
deleted_user
deleted_user
Melissa,
I know all to well what you are going through, but a word of advice....Sit down and make a list of the questions that you have even add your families questions. The fist appointment is so full of information that yes it is hard to absorb it all so do make sure someone goes with you. If you really don't want your mom to go then might I suggest taking a tape recorder with you. That was she can hear what the doc says and that might ease her mind. My parents also live far away but they don't mind driving me. It was hard at first to get my mom involved. But there will e those times that you will need someone to help you out if you have an attack. But do let your parents get involved. I know it was so hard on mine when they found out. Its hard for them to see their kids go through something like this. They want to learn and understand too. Also pick your mom up some info that always helps too. Even if you don't want them to go, PLEASE make sure you do have the support when you go to the doc. It can be very overwhelming! Sad to say but MS has brought my family back to me. I don't know what I would do sometimes with out their help. I too am a strong independant women but sometimes we all break under this stress. Remember to write those questions down it helps a lot! Hope this helps.
Dee