What would you ask?

[CalfeeChick]

Ok, in about two weeks I will be getting all the results if the MRI's, spinal puncture, lots of blood work, etc. At that time we'll be deciding on my treatment options.. Question? If you had your first visit to do all over, what questions would you ask? I would really appreciate your ideas. Thanking you all in advance, Lynn #CalfeeChick

[jimeka]

Morning Lynn, is it this appointment that you find out if you really do have ms and what type? Here in the uk with me having PPMS I have never been offered any medication so I have no advice for you, all I can offer you is prayer support and hope someone on here can help. What I would say is go with a written list of questions you want answers to, make the most of this appointment it could be a while before you can get another, write down the answers to the questions so that you don't forget. Let us know how you get on, blessings Jimeka

[erash in reply to jimeka]

I agree with jimeka

Be prepared for many responses of "it might be..." MS presents and progresses so differently in everyone that these are the answers I frequently get.

At the time of my diagnosis, there were only 3 dmt's.

So many to consider these days.

A question to consider asking your doc: "if I were your wife, mother, or daughter, what would you do?" This adds the intuitive, emotional, component to their often straight line clinical approach.

It's a medical ethics benificence fundamental question.

Let us know how things go.

[CalfeeChick CommunityAmbassador in reply to erash]

I like that! Will post results..

[Sukie427 in reply to erash]

Good ideas, Erash, especially the comparison to his/her family!

[CalfeeChick CommunityAmbassador in reply to jimeka]

I got first diagnosis in August,38 lesions, then referred to UCSF for more evaluation.. didn't like first Neuro. New Neuro had high definition MRI, spinal tap, nerve conduction tests, blood work.. I get all those results and decide on therapies then. Thank you.

[Sukie427 in reply to jimeka]

jimeka , I know that the UK has socialized medicine, but are there any plans to offer that new drug (I forgot the name) that was just approved in the US for PPMS? The truth is that when I was first diagnosed, the docs couldn't agree on the type of MS I had, so they just put relapsing. Because at that time there was no treatment for PPMS, if that appeared on your medical record, insurance wouldn't cover anything because there was nothing on the market for it. But now there is. And I hope that you will be getting it very soon! Hugs, Sukie427

[Jesmcd2 CommunityAmbassador]

CalfeeChick l wish you much luck and prayers first off. All l can tell you is be prepared to hear it. Even though I was, l really wasn't when l finally heard the words out loud. I started crying.

Take someone with you, to hear what you dont! The blood was rushing to my head and all l heard was that the odds were good that my girls and grandkids weren't going to get it.

Nothing else mattered to me ♡

Keep us updated please ~ hugs ~

[CalfeeChick CommunityAmbassador in reply to Jesmcd2]

My hubby always goes with. Will post results..

[CalfeeChick CommunityAmbassador]

Thank you so much, great ideas!

[agate]

When I had my appointment with the neuro who was announcing the MS diagnosis, not much was said about treatment because at that time (1980) there wasn't any, but nowadays there are the DMTs to choose from. Many neurologists won't recommend any one in particular but will give you the names of a few that are appropriate for you in that doctor's opinion.

Back when I went on Avonex (2001) the neuro loaned me 3 kits to take home and look over--one for Avonex, one for Betaseron, one for Copaxone. Rebif wasn't around yet. The kits included videos but they were put out by the pharmaceutical companies and so were really promotional material. They contained helpful information though.

I don't know if this is still being done but each drug has its own Website with lots of information about it.

[Jesmcd2 CommunityAmbassador in reply to agate]

I wish you guys were around when l was dx'ed. My questions would have been better for sure. All l wanted tho was to know for sure what was wrong with me.

I wasn't given options on what meds to take, he just said Copaxone. Which would be best for me. I said ok. ~shrugs ~

Then l asked when was the surgery to cut it out... lm pretty sure my Dr thinks lm nuts. But seriously they do brain surgery all the time, so just get rid of it all ready

I'm such a bottom line, and basic thinker as my mom says. Hahaha

[erash]

starlight5 wow! Really great suggestions.

I always get copies of my MRIs. This way as new research reveals things I can look at my scans and see if there are correlations.

I haven't gotten copies of the docs notes but wish I had. What/how things are written can make a diff. In qual. For disability etc.

A recorder is a super idea! My husband is there but we all hear things subjectively. This gives you an objective reminder.

[MSAA_Staff]

Hello CalfeeChick ,

In addition to some of the wonderful advice everyone has already offered, MSAA offers the S.E.A.R.C.H. Toolkit on our website with a couple different resources to help you choose the appropriate treatment for you: mymsaa.org/ms-information/s...

On this page, you can find a recorded webinar from October, a chart of the FDA approved DMTs, and the S.E.A.R.C.H. Program Overview Booklet with a guide of sample questions to ask your healthcare team.

Best of luck with your appointment!

Emily from MSAA

[Sukie427]

Hi, Lynn. I wish I did have it to over, because I was so shocked with the dx that all I could do was cry and ask if I was going to die. Now, I would ask what type of MS I actually have and what I can expect to happen. I would also ask about all the different treatment options, together with the side effects, and not leave the appointment until both my dr and I had decided on which one (if any) I would be using. I would establish a way to get hold of him/her or someone in the practice who can help at any time, either with questions or because you don't feel well, because relapses don't respect business hours. And I wouldn't walk away without the doctor knowing that I am an interested and vested partner in my care and that I expect my questions to be answered and my suggestions to be seriously addressed. Best of luck!

[Jesmcd2 CommunityAmbassador in reply to Sukie427]

I did that to Sukie427 but l waited til l was in the parking lot. I about passed out, and fell to my knees in hysterics. Thank God my daughter was with me! AND she had the forsight to bring my Xanax. She let me cry it out and just kept telling me l wasnt going to die. Then goes " Mom, we all die just not today " l really have a smart kid ♡

[Sukie427 in reply to Jesmcd2]

Yes, you do, Jesmcd2. I do hope you finally got around to asking and getting answers to the right questions, though.

[Jesmcd2 CommunityAmbassador in reply to Sukie427]

Nope Sukie427 l haven't, seems like every time I go see him it's for a specific reason. That and Mom always told me, if you ignore it, it will go away.

I was really hoping it would work. ~shrugs ~

Hoping next time l go, he will tell me what kind of MS l have. Not that it really matters, besides the meds.

How are you feeling? l know back injuries are the worst. I hope your taking it easy and resting before your trip.

Jes ♡

[Sukie427 in reply to Jesmcd2]

OK, Jes, did you finally get the right answers or have you still not asked the right questions? You have got to do this, woman--be your own advocate because nobody else will! Good luck!

[Jesmcd2 CommunityAmbassador in reply to Sukie427]

Hi Sukie427 ! Where have you been hiding? We have missed you!

I'm sure they will get ahold of me shortly with an appointment. I'm not in any rush 😁

🌠

[Fancy1959]

CalfChick, it's Fancy1959 responding back to your post. There are two main suggestions i would offer you concerning your first neurological exam.

1. Compile a list of questions from the 15+ replies you have had from chat room replies. Then do not budge one toe out of the Neurologist's exam room before he replies to and explains in enough detail that you understand all the questions you brought in with you.

2. Make sure your neurologist goes over each and every test results with you. If you have had an MRI, ask that he pulls it up and shows it and explains it to you. You paid for the test. You need to make sure no cornors are cut and you walk out of that appointment understanding your disease much better than you did when you walked in.

I hoped this helps. I have walked out neurologist office with more questions than i walked in with. I had MRI's that i never saw the results from. Don't let that happen to you. Remember number one information is our friend. And remember that together we are stronger.

I was going to wish you good luck, but luck has nothing to do with it. Go in prepared and don't settle for anything less than leaving with total understanding. Please let us know how it goes Lynn.