Seeing doctor at the end of April; any advice?

[jjs]

Hello to all. I have a history of making appointments and then cancelling them. I am now scheduled to have repeat MRIs and a neuro visit at the end of april (she gets the MRI results right away so we can take care of everything on the same day; she's 4 hours from me). I am NOT going to cancel it.

The last time I saw her she said she and the MS specialist on her team agree that there is either one of two things wrong with me. 1) I'm crazy or 2) I have MS. They both agreed that I was not crazy. I like this woman a lot and am so thankful to have her for a neuro. I appreciate especially that she sees no need to do the LP and she did not give me a big long speech trying to talk me in to taking drugs.

There were spots on my MRIs but not conclusive enough to say "MS" for sure (to meet the 'McDonald criteria'). I had a very rough past life with plenty of drugs, alcohol, etc and she said the spots that are there could have been because of that. But she also said to come back in a year for repeat MRIs and she's sure something more definite will show up. So that's where I am now, except it's been over a year.

Now on to my question. I have such a hard time seeing the doctor because I cannot think straight to save my life. I want to be able to effectively communicate to her all that is going on with me AND share my opinion about how it seems like I have something a bit more drastic than RRMS (not saying RRMS is not drastic enough) without coming off as me trying to self-diagnose.

I started a journal last summer 'just in case' I decided to see the doctor again. Though I have not been 100% consistent with it, I have updated it enough to be able to type up some sort of a symptom list and timeline for her. This way nothing is missed. But does anyone have any other advice for me? I just feel like I need some sort of 'advocate' besides myself, yet no one really knows me like I do. Maybe if I heard how your diagnosis's (is that proper grammar?!) went I'd get some better ideas of what more I can do?

Thanks for listening. If something was not clear or you need more info, just ask.

[book lover]

You are surely not alone in not being able to think clearly at a dr's visit, especially when being dx with a serious disease.

Having a list of symptoms and timeline that you can hand to the dr is great.

Here are some other suggestions that might make the visit easier for you and more productive:

1. Do you have someone who can come with you so that you have 2 sets of ears to hear what the dr says? Perhaps that person could also take notes of what is said. If it is someone you are close with and you are comfortable with them asking questions you might hear a question you didn't think of.

2. You could ask the dr if he/she will write down the important things that you need to know -- many drs are willing to do this.

3. Remember to ask questions if you don't understand what the dr is saying.

4. Some drs will let you tape the visit but many are unwilling -- they become cautious as to what they say and how they answer you. I know of one dr who controls the recording -- turning it on and off so it records just what he wants it to!

5. Ask the dr if you can e-mail him/her after the visit if you have additional questions -- you can also say that you need some time to process what he/she is telling you.

Good luck and please keep your appointment - it is important that you know exactly what you are dealing with.