Headed to the MS Specialist...what to expect?

[Twinsmom06]

So I'm headed to the MS Specialist down in Detroit on Monday. I have been waiting well over a month  for this appointment and have been seeing my general neuro for about 9 months or so. My neuro is scratching his head with me so I decided to get another opinion.

My neuro stated that when he first saw my MRI report he would have bet some big money that I had MS. I know MS is a clinical Dx but my brain is a hot mess with little-to-no explaination as to why. Everything has been ruled out, I don't have headaches, I don't have strokes, I don't have lyme or a blood clotting issue. I have had every test known to man. But my LP is negative and my symptoms are honestly minimal and tollerable.

I have had a couple of 24-48 hours of vertigo over the last couple of years. I ended up in the ER thinking I was having a stroke in October due to left arm/face numbness that slowly moved up my arm, to my face, across my chest and back and then just decided to hang out that way for about a day. I have had some very mild numbness in my left hand/arm from that point on but nothing that changes my life. I had fainting spells between the age of 18 and 21 (I'm 31) and a sezuire during two of them. Nothing that sent me to the ER or anything...although looking back that would have been a fantastic idea:)

I feel very lucky to have that much "damage" in my brain and still feel pretty darn good for the most part. But this is where my neuro stops. He does not want me on DMD becuse he can't confirm MS and I have mild symptoms. But even if what happened in October was CIS...shouldn't I be on something if my brain MRI supports what happened?

I had a follow-up MRI of the brain which shows no changes and no enhancements...which is good! But my 1st MRI had over 1000 images and the follow-up only had about 100. How the heck is that a comparison???

Anyhoo...I go to the MS Specialist on Monday the 4th and I just don't know what to expect, what to ask, how I should feel, what my expectations are or anything. I just feel like this will be another "I don't know"...we will check you again in a few months. I almost don't want to go because I feel like it will be a big fat waste of time. After 9 months all I have is a bunch of pictures of my brain telling me something is off...but nobody can tell me what or why. Wow...I'm a downer today...LOL. Sorry!!

Any thoughts or suggestions on questions to ask or items of information I should not leave without?
Thanks for all your support! (((hugs)))
Kim

[Jacksmom516]

My experience was different as well.  It was about 3 hours -  and I too talked for about an hour of the time.  He wanted to know my entire history -  when did I first notice things - who I saw etc.... Then he did a full Neuro exam and then He set out my game plan on followup visits, repeat MRI's etc Lastly I had two eye exams.

He did impress me though I am on Avonex and we discussed the new Avonex pen and he called in a script for it the very next day!  Totally impressed.  That after he was the one who met me in the waiting room not a nurse or assistant.  

Can't wait to hear how it goes.  I did as the others did write stuff down since the memory isn't always the best,  And I have found that i use the memo function on my phone more to keep a running list for my next appt.  Just a suggestion!

Let us know how the appt is.

Tracy

[ku111]

I was a little suprised when we met our MS Specialist.  She looked through the files I brought quickly.  Pulled out a few things to put in her file and then turned around and said I make my own interpretations.  I only want facts and my own evaluation.  We have learned a little from her but she mainly does a quick set of tests/physical and looks at him a lot.  I have asked if there is any reason to keep coming to her and she looks at Jordan (my son) and says if it is ok with you I'd like to watch you grow-up and you need me and I need you.  She is very honest and blunt.  No beating around the bush.  I like her and so does he.  I really think they focus on MS symptoms/facts and if you don't have them they don't waste anymore of your time.  We have found the MS Specialist to be very helpful and our pediatric Neuro admits this is beyond his knowledge but is here and closer for us.  They somewhat work together.LOL!  I definately get the feeling they are elite in the field.  No regrets here.  Just one of many great suggestions I received from this forum.  Goodluck!  They really are so intelligent and insightful.

[Twinsmom06]

You guys/gals are awesome! I think my nerves are getting the best of me and I''m having a little "fight or flight" going on...and I'm a lover not a fighter...LOL.

I have taken in everything that you have said and will work on my listening skills and sharpening up my journal so I can bring a concrete, non-narrative, short list of questions as well as events!

My neuro is really awesome about wanting to know how I feel and what I want. I'm ready to have someone just TELL ME what to do and maybe get a better picture of what is going on. I'm totally cool with not having MS...really...I am! But at the same time...I want some sort of clue as to what else it might be so I can move forward in the right direction.

Again...thanks so much!!
Kim

[Jifr]

Hi there.

I see an MS specialist at the Waddell Center.  They wouldn't see anyone until after they had an opportunity to review everything and confirm, for the most part, that you had MS before they would even see you.   (I got the impression that they were not in the "diagnosing MS" business).

Anyway - my experience was vastly different than what everyone else posted.  

My visit was almost three hours.  The specialist and NP spent over an hour just talking to me. They wanted to know everything from my first symptoms, to how I ended up going to the doctor in the first place and everything that led up to the moment that I was there to see them.


They did a battery of the traditional neurological tests and then discussed MS in general and MY MS in specific detail.

It was an amazing experience to have a doctor actually sit there and listen.

Towards the end, he asked me what my top 3 issues were.  He said that what they want to do is symptom management and they will do the best they could to keep things going okay.

Unfortunately, that MS Specialist isn't there anymore and things are...different...but my initial experience was fantastic.

I hope you get a thorough exam, have a satisfactory visit and get some answers.  :-)

Oh - I also took a list of questions and some notes about my MS with me.  Their eye literally LIT up.  They loved it. And, everytime I went with a list or notes - they were APPRECIATIVE.  Can you imagine?  :-)  So... make a list, check it twice...and take it with you!

[monnie115]

I saw an MS specialist last week. He spent 1.5 hours with me and I didn't talk much either. :0) One thing I would strongly suggest is to hand the doctor a summary of symptoms and relevant health information, in order of appearance. Mine was full of rough estimates, because everything had been subtle (most of it) and I didn't know exactly when things happened. My summary basically gave a year and then a brief list with bullets of events and symptoms under that year. He even told me that it was very good and helpful to have it.

I don't know about you, but when I go to the doctor, my thoughts get jumbled. This helped me (and the doc) to stay totally on task, and it really helped to organize a complicated medical history. Because of it, he diagnosed me with an additional neuralgia I didn't even know I had, which led to my diagnosis of MS.

I wish you the best for your visit.

[kwarendorf]

RE: Jane's "they will throw down mad info"

This is very, true. The best thing I did was bring a second set of ears. While I was concentrating on freaking out my girlfriend was actually listening :-)

If you have someone to go with you, I would highly recommend it.

Kyle

[JaneK1975]

I would agree with Kyle. Be prepared to briefly review your tests, answer a few questions, be subjected to a full neurological exam (physical tests where they watch you perform tasks - they will tell you what to do), and most of all LISTEN.

In my experience, they will throw down mad info and you will just be concentrating on trying to take it all in. It's a good thing.

Even if you don't get an answer while you're there, it won't be a waste of time. At the very least, you will know that the best of the best reviewed your case, and you will have a second opinion on the path forward to ensure your optimal future health.

Best wishes,
Jane

[SarahL2491]

Kyle has given you some good advice, and my visit went much as his did, he had already looked at the MRI disc I had brought with me, and mine lasted snout an hour, I got about 10 minutes of discussion in

Good luck, RELAX, it sounds like you will be in good hands

[kwarendorf]

If this were a dance I would let the MS doc lead. Bring your files but don't be surprised if he/she doesn't spend a lot of time with them. Let the doc guide the process. I would not walk in with 1,001 symptoms. Instead I would focus on a top 3 list. They should know what they are looking for.

During my first visit with my MS doc, which lasted 2 1/2 hours, I actually spoke for about 7 minutes :-)

Just one man's opinion.

Kyle