[Natalie8]

On Thursday I have an appointment with the MS clinic in my city that has the "famous doc." They said the waiting list was 1+ years. I signed up right after I got diagnosed. I have waited 9 months so I guess it's good I got in a little earlier. I'm switching to the clinic just to be in a place that specializes in MS.

Anyhow, I'm feeling super nervous about this visit. My stomach is in knots. The last big visit was the second opinion to verify I had MS that came from the doc. who described my brain as swiss cheese (not so nice and very traumatic). I've failed on the interferons and copaxone. I'm afraid of what I might have to try next. Right now I am on no medication and I feel so much better!--it's been much easier to pretend I don't have MS. Somehow going to the doc. and having to talk about meds, the MRI's and my future will just make the MS more real. But I know I probably need to keep trying meds until I find something I can tolerate.

I'm scared to death of what the neuro might tell me. I just don't think I can take another traumatic encounter. I feel like going to the new doctor will be like re-living the whole diagnosis all over again. In fact, I feel like today I am re-living the shocking out the blue diagnosis all over again.

Any advice on how to approach the new neuro OR on how to minimize the anxiety?

Thanks all.

[suzyqz_2007]

The best thing I did when I went to my neuro the first time was take a list of things I wanted to ask him about. He was great and gave me the time to go over everything. I also had dh with me so that afterwards I could talk with him about the appointment, he remembered things the neuro said that I didn't catch.

I wish I could offer more advice but I can offer you and will keep you in my thoughts and prayers.

[PolarExpress]

#1 Making a list and putting the most important things at the top of the list is always a good idea..#2, remember to take the list with you (I had to rely on my memory once, trust me, remember the list)..#3, Close your eyes, breathe deeply, and imagine every detail to the best of your ability of how you want this appointment to go. Sounds corny, but it really helped me. Best of luck & let us know how it goes!

[mom23angels]

Aww Natalie,
I do wish you luck on your visit! I really can't say anything about the Neuro. visits because I struck out on three Neuros. My first one is kinda young and seem inexperienced and has to look some things up on the internet. The other two (one was the MS clinic in Atlanta) and the other another Neuro were just plain mean and evil and gave me the idea that I should just suck it up and deal with the MS.

So.. I went back to #1 even though I havent seen him in months. I was on betaseron but my insurance stinks and I'm not going to pay out of pocket so I'm waiting for the betaseron need-assistance program to call me back and also applied for the oral research study in Atlanta. So, I have just been taking a lot of vitamins and resting and taking Baclofen for spasms so I don't get those evil things again.

Don't worry about the lesions in your brain, I heard somewhere that we only use 10% of it I might only use 2%..so that's plenty of room for lesions. My biggest worry is my lesions in my neck which I think is the reason I became numb and hypersensitive on my left side. It's a little better but I don't think I'll ever fully recover from that.

Just like everyone said, bring a list of things you want to speak to the Neuro. about and relax.. take a deep breath and don't get yourself too hyped up because I think it's the fear of the unknown thats worrying you more than what the reality could be and remember we are here for you and we care about you..and please tell us how it goes!

Monique

[greta]

Make sure you have your questions written down and prioritized - they seem to really appreciate that. You'll do just fine. He might be famous, but he still puts on his socks just like you and me!

[snoodles]

Awe Natalie,
You have received wonderful advice - best of luck to you with this upcoming visit !!!!

Snoods

[NurseNancy]

natalie,

i can't add to the great advice already offered.
if you can bring a friend or family member as a 2nd set of ears it might be helpful.

when i go to my dr (who really listens and lets me ask Q's) i also jot down what he tells me in answer to my Q's. if i don't i know i'll forget.

taking some deep cleansing breaths is also a good idea.
good luck. keep us posted please.

[Dejibo]

Best thing you can do is TELL HIM you are very nervous, and ask him to be patient with you. That you may ask him to repeat things for you, just to help you understand.

Bring a LIST! put it in order of importance. That way you can get to the big boy concerns first, and WRITE DOWN his responses or bring a mini tape recorder. When you get to the middle of your list, you will see that those other things are important, but you wont be so panicked about the answers because you got the big boy things answered first.

Bring someone with you. A friend, a neighbor, a family member. Sometimes the way I hear things and the way the hubby hears things are sooooo different. I thought an MD was being dismissive, and rude. The hubby thought it was his attempt at humor. he sucked! It did help me feel better that someone else saw his mood differently than I did.

Get some sleep! a sleep derpeived brain is more likely to forget, and go into cog fog. Relax! dont let this guy rush you. You waited a long time to see him. Plant your fanny in the chair and stay till you get your answers.

[viseeu]

Originally Posted by Natalie8

I have waited 9 months...

Anyhow, I'm feeling super nervous about this visit. My stomach is in knots.

I'm scared to death of what the neuro might tell me. I just don't think I can take another traumatic encounter. I feel like going to the new doctor will be like re-living the whole diagnosis all over again. In fact, I feel like today I am re-living the shocking out the blue diagnosis all over again.

Any advice on how to approach the new neuro OR on how to minimize the anxiety?

Thanks all.

Natalie, I feel your pain
really like what Dej said... let him know how your 'feel'.... that you are nervous, scared about seeing another doc, how the other one traumatized you with saying your brain was swiss cheese! (a$$h*le) and ask him to be patient with you! Hopefully he will be like my doc at the MS specialty clinic and take ALL the time you need!! It sounds like you are a good candidate for one of the oral clinical trials or some other clinical trials. I know it would be nice to bury your head in the sand, but you know that will not help you--denial is not a river in Egypt!

re: the anxiety... well, they put me on benzodiazapines soon after my diagnosis, I tried to ween myself off them without success, and have accepted that this 'nerve' disorder needs them to keep anxiety at bay, so klonopin or xanax is an option for you. Also, yoga type breathing (deliberate and conscious breathing) is very good to relax us and relieve anxiety. I actually find exercise, stretching, and deep breathing helps overall with anxiety, as well as keeping cramps, bruising, and weakness.

last, already mentioned... take a list of questions, and take someone with you to 'hear' and help you remember, make notes, and give you their support.

we will be looking for your report of the visit nlt Friday!

[Rissa_TX]

Natalie,
Best of luck to you!
I find it helpful to either bring a friend/family member or a tape recorder. It never fails that I forget half the answers because I'm so focused on asking the right questions. And yes - for me, bringing a list is very helpful too.
As a fellow Texan, may I ask what city you're in? I believe you're probably referring to Dr. F...? in Dallas. Sorry, can't remember his full name... but if so, I've heard really good things about his bed side manner. So, hopefully that's helpful for you to hear!
I have my first appointment with the MS specailist in Austin/Round Rock on Thursday too... his name is Dr. Fox, and he's pretty 'famous' in the MS circles in Austin too. Thanks for posting this - hope you don't mind if I steal your advice! (OK, share, not steal.)