Search Discussions

Main Content

  • cjtmn

    I am just wondering what I should expect from my first meeting with a neurologist specializing in MS? The general neurologist Dx'd me a couple of weeks ago, and from what I have read, I meet all of the McDonald Criteria and have gone through the "rule out everything else" as well, so I am not really expecting to hear it is something different (the general neuro referred me to this specialist).

    I have a long list of questions, which I will prioritize, and am curious about other people's first MS-doc appointments. I have no idea what to expect, other than I know I'm hopeful to understand what is going on with me a little (or a lot) better.

    Thanks,

    Cheryl

  • chutter8

    Hi Cheryl, 

    MS specialists are great.  They have lots of information and can answer lots of questions.  My first appointment with a specialist was ok.  She looked over my MRIs and other blood work and did a neurological exam and 100% confirmed my diagnosis.  Not going to lie, that made me break down a little because even though my general neurologist had already given me a diagnosis I was still holding out some hope that it was something else.  You sound like you have already accepted your diagnosis though so you might take that part better than I did.  But after that, it was all about answering my questions and discussing treatment options.  My first appointment was only about a half hour with the specialist.  

    I've had only one other sit down with my specialist about 2 weeks after my first to discuss the results of my blood test that she ordered to check for the JCV virus because she was looking at Tysabri for my treatment.  Mostly I see my general neuro.  My specialist is at Columbia University and therefore really busy so my general neuro does most of the communicating with the specialist.  It is almost impossible for me to be able talk to the specialist because she is so busy but my general neuro can because its always easier for doctors to communicate with doctors haha 

    My advice, take someone you trust with you as moral support if you can.  Even if you'd rather be in the office with the doctor by yourself it can be nice to have them there for the ride to and from the doctor and just for a hug after if you need it.  I had my Aunt and my boyfriend with me and it was nice to have the comfort there.  

    Good luck! Let us know how it goes!

    Corie

  • cjtmn

    Thanks, Corie - I will admit that part of me is holding out a little hope that my MRIs were mixed up or something, so I imagine I could have a similar reaction! I appreciate your post. It helps to give me some idea of what to expect.

  • KariAnn

    It is a great idea to bring a list of questions for your neurologist.  You may also want to keep a health journal to document how you're feeling day to day.  The neurologist will probably do a physical exam that tests reflexes and balance just to see how you are currently being affected.  My neurologist showed me the MRIs and pointed out the lesions.  In addition, the neurologist will discuss treatment options with you.  You may want to check with your health insurance to find out what medications are pre-approved for coverage and which aren't.  MS drugs are usually considered "specialty drugs" and have a higher co-pay, but the pharmaceutical companies that I've dealt with (Teva for Copaxone and Biogen for Tecfidera) both offer co-pay assistance programs that may cover most if not all of your monthly co-pay costs.  Good luck and best wishes!

  • cjtmn

    Thank you, KariAnn! I really appreciate your post.

  • lizzybell

    My regular neuro diagnosed me ans started me on medication. I was referred to specialist which wanted more tests to confirm which will take 2 months. So be prepared for that . Have you had a lumbar puncture?

  • cjtmn

    Hi lizzybellI - I imagine that was difficult. 2 more months of waiting!

    I have had a lumbar puncture, brain and cervical spine MRIs plus a series of blood tests. Thank you for sharing your experience. I was wondering if it might be possible that the specialist disagrees with the general neurologist. I guess I will know soon enough.

  • lizzybell

    Curious... How did it go? 

  • cjtmn

    It went great - I was scared out of my mind, but the facility where I had it done was amazing. I had it done with fluoroscopy, which was also cool and reassuring. The doctor knew exactly where he was and I got to see the pictures afterwards. I felt no pain at all. I have had 2 children, and my epidural experience with each was waaaayyyyyy worse!

    A few things that I learned:

    1. Plan to lie FLAT (back or stomach) for 24 hours afterwards. No side lying or incline. It sucks, but do it anyway.

    2. Drink LOTS of water.

    3. Do not lift anything for 48 hours. I was doing OK with the headache until I lifted the crockpot up -- I felt the twinge where they went in immediately and within 5 minutes had the headache. It went as soon as I laid down, but I knew it immediately.

    4. If you get the headache, Excederin is awesome! I had it off and on for about a week. It didn't warrant the blood patch in my case, but I really slept a ton and practiced self-care. IMPORTANT!

    Good luck & let us know how it goes. I would not be nervous to do it again, if that helps.

  • janettomas
    Hi, I am going to see a specialist. My general neurologists believes I have MS but wants to get an opinion from the specialist. I have been dealing with this for 10 years. I see the specialist next week and have all my test results already. I'm just preparing myself for more tests because I feel like all doctors want their own tests done. I'm so tired of dealing with these symptoms. Do you have a lot of symptoms? It seems as if I have every symptom for MS!!! Hope you get answers soon. We are all in this battle together. No one can ever understand the effects this disease has on your life if the haven't experienced it for themselves.
  • lizzybell

    Yes the specialist will do more tests. I thought I was done with everything and went  to spr

    ecialist . 10 more tubes of blood drawn. Serioslusly 10. 3 more MRI's"s and evoked potential test to do. Still waiting. First neuro ex me and put me on meds.

  • lizzybell

    Yes the specialist will do more tests. I thought I was done with everything and went  to spr

    ecialist . 10 more tubes of blood drawn. Serioslusly 10. 3 more MRI's"s and evoked potential test to do. Still waiting. First neuro ex me and put me on meds.

  • janettomas
    Hi, I am going to see a specialist. My general neurologists believes I have MS but wants to get an opinion from the specialist. I have been dealing with this for 10 years. I see the specialist next week and have all my test results already. I'm just preparing myself for more tests because I feel like all doctors want their own tests done. I'm so tired of dealing with these symptoms. Do you have a lot of symptoms? It seems as if I have every symptom for MS!!! Hope you get answers soon. We are all in this battle together. No one can ever understand the effects this disease has on your life if the haven't experienced it for themselves.
  • lizzybell

    Cjtmn...... Did you get a diagnosis yet? 

  • cjtmn

    Hi janettomas - currently, my main issue is various forms of numbness from my right jawline down my arm and throughout my hand/fingers. I originally also had patchy numbness from my toes to my neck on my right side, but everything except my upper body is mostly back to normal. My right hand is only partially functioning - it feels swollen but isn't, and my fingers are uncoordinated and feel disconnected. Lately, I'm noticing the cog fog, too, and seem to be bumping into a lot of stuff!

    I am hoping for no more tests...but I guess we will see. This is likely my 3rd flare up. The one previous was exactly one year ago, and I had every test under the sun except a lumbar puncture (I declined it).

    Keep us posted on your appointment. I hope you get some definitive answers.

  • cjtmn

    lizzybell - after reviewing my LP and MRI results with me, the general neurologist said "this looks like it's MS." I had some blood tests that were outstanding at that appointment, so I called the next week and learned from her nurse that those results were negative. So I asked directly if my diagnosis was a firm/official Dx now that the extra tests were back. Her response was "yah, pretty much."

    I am trying to prepare myself for more tests, however this is my 3rd neurological flare up since 2008, in 2014 my cervical MRI showed a non-active lesion "most consistent with demyelinating disease," and I now have a positive lumbar puncture with 14 unique oligoclonal bands and multiple enhancing lesions in both my cervical spine and brain MRIs. All tests for mimics have been negative as far as I know. So I am expecting the specialist will confirm the diagnosis on Monday.

    Then again, nothing about the last 7 weeks has gone how I expected it to! 😆

    While I do not want MS, I have now had several weeks to adjust to the news. I'm ready to move forward and understand what I can about where I am at, what I can do to live the healthiest life possible, and what the next month or so will look like. I will report back on Monday.

  • cjtmn

    My appointment went great - the neurologist took so much time with us. Bottom line is that I meet all the criteria clinically for MS. However, we still need to rule out Neurosarcoidosis. I have a CT scan tomorrow. If that comes back clean - and we are all expecting it will - then she will confirm an RRMS Dx and we will start a DMD treatment. If the scan is not clean, they will biopsy the lung tissue for sarcoid.

    in the meantime, I have started a Medrol pack (2 simultaneously, actually) and am looking for OT closer to my house for my hand/arm. Next appointment date is Nov 18.

    Cheryl