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  • tberger4
    Hi everyone!  Was just diagnosed last week.  This might be kinda convoluted....but heard from the gp that my multiple MRIs were being diagnosed as MS, after talking to my neurologist, who I'm not going to see for another week...grrr. To be clear,  my gp talked to my neurologist...I only talked to a nurse in his office, who told me the results were consistent with MS.  And then the gp said no more diagnostic tests were needed.  So I'm very unsettled.  What should I ask my neurologist when I finally see him?  What should I expect as far as a treatment plan?  Should I look for a doctor who specializes in MS?  What is your best advise for my first MS appointment?  Honestly my head is still spinning!  
  • golgotha
    I'm sorry to welcome you to our exclusive club. But hey, since we are exclusive, that must mean you're "special" -- right?! :)

    What should I ask my neurologist when I finally see him?  What should I expect as far as a treatment plan?


    This depends on you, your insurance, your doctor, and some other factors. But in general, it's likely your neurologist will want to put you on a Disease Modifying Therapy (DMT). This is often a drug to suppress your immune system. That makes you more susceptible to everything from common colds to cancer, but it works to stop your immune system from attacking your brain and causing MS attacks which produce "lesions" (aka literal "brain damage").

    This is all heavy-duty stuff, eh? If you're "only" very unsettled you're doing better than I was immediately after my diagnosis. :)

    I'd recommend watching some YouTube videos and educating yourself about MS. But be careful about YouTube videos: Some are great, informative and useful. Some suggest alternative treatments which may be good or bad. Many are from MS patients themselves of varying qualities. But some are from flat-out crackpots or sleazeballs looking to scam sick people out of money.

    This doctor (a mainstream MS-specialist neurologist in Ohio, Dr. Aaron Boster, who likes making YouTube videos) has a bunch of great advice about various drugs and MS in general -- highly recommended.

    He's got a video specifically for newly diagnosed patients that I'm pretty sure you'll find interesting and reassuring. And there are a wealth of other tips and information that you're likely to be interested in.

    And if you want some other recommendations, just let me know. (I don't want to toss too much at you at once.)

    Should I look for a doctor who specializes in MS?


    All neurologists have some knowledge about MS, but yes, you'll want to find one that has a decent number of MS patients and some distinct experience with the disease. And also one you can talk/relate to/with. MS is highly individualistic -- though there are common or general things, each person's disease is different. Some doctors don't seem to grasp that.

    What is your best advise for my first MS appointment?


    Umm, beats me. :) For me that was 30+ years ago and I was in sort of a deer-caught-in-headlights mode.

    To close and summarize this message, a thought: So you've just been handed a life-altering medical diagnosis, right?

    Heavy-duty stuff! Take this time to rethink life. And if need be, change and alter things. I mean from the way you think to the what you're doing in life.

    You just got a big incentive to revamp your life and focus on health -- everything from exercise to eating healthy to reducing/finding healthy ways of dealing with stress to paying more attention to your mental health...to everything.

    Most people never have that opportunity -- they're bogged down in the daily grind of life and many tend to stay there. But since you have had this earthquake of a diagnosis, spin it as a positive and use it (it beats the heck out of viewing it entirely as a negative, trust me:).
  • brink250
    I would suggest educating yourself. Learn how to understand your mri.  Multiple sclerosis is multiple scarring  Have you had a VEP or spinal tap done yet. Educating yourself is the best advice anyone with MS could give. God bless 
  • MS_Navigators
    I am glad that you reached out, tberger4. We have a lot of information and resources that I hope will answer some of your questions.

    Knowledge Is Power: A self-paced learning series for anyone facing a new diagnosis of MS, presented in a series of topics to help people adapt and live well with MS (includes personal stories and professional resources). nationalMSsociety.org/kip

    Newly Diagnosed: National MS Society

    Treating MS: National MS Society

    Make the Most of Your Doctor Visits: National MS Society

    If you have other questions or concerns, our MS Navigators are available from 7a.m. – 5p.m MT. Call 1-800-344-4867 or email ContactUsNMSS@nmss.org.

    Best,
    Stephanie, MS Navigator
  • anywhereoutofthisworld
    This is a stressful time & I am sure it hits you like a ton of bricks as it did me. I was diagnosed in late July of 2017 but my neurologist believes due to the sheer amount of lesions discovered in my brain MRI results as well as the high amount of protein 'o' bands shown in my spinal tap results that I've had Ms for sometime. He says he can't say how long but quite sometime is his best guess. I think you should ask your neurologist specifically how many lesions & perhaps even suggest a spinal tap. I did discover a list of questions via WebMD that is recommended one ask at their first Ms appointment & here they are:

        What kind of multiple sclerosis do I have?
        Could anything else be causing my symptoms?
        Will I have new symptoms? Will they get worse over time?
        What can I do at home to manage my symptoms?
        What drugs and other treatments do you recommend for me?
        How will I know if the drugs are working?
        What side effects should I expect, and how should I handle them?
        Can exercise or physical therapy help me feel better?
        Will MS affect my sex life? Can I have children?
        Are there any local support groups?

    I was suggested Tecfidera as far as medication to fight Ms progression, it's an oral capsule 240mg I take twice daily. There are risks with it as is the case with all Ms drugs but you will have to read up & decide which one is best for you. This website is a great source of support so you've come to the right place I can assure you.
    Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain. – Vivian Greene
  • began1031
    I to am new to this as I was just diagnosed a few months ago and actually just got second opinion yesterday which confirmed it. I would definitely recommend a ms specialist and a second opinion. I don't believe there is a stupid question for the dr except the one not asked.  I kept a journal with everything I was feeling eating and doing in between visits and gave to dr on following visits. Might be helpful for you and dr to spot triggers and make a treatment plan.  Good luck and welcome to the club 
  • jennifer_m
    Welcome to Planet MS.  Please strap in, hold on, and feel free to scream.
    O.k., enough of the bad humor, now for the positive stuff.  Ask your neurologist any question bouncing around in your freckled brain (good exercise options, diet suggestions, etc) but also tell him how you ended up in his office to begin with.  My nerologist asked me that question and my story gave him a place to start as to how to proceed with my treatment.
    Do get educated about MS.  The National MS Society website as well as WebMD.com are reliable places to start  Don't overwhelm yourself at first, take little sips of info at a time to absorb it better.
    Most importantly, YOU are the one living with this disease so it should be your choice as to how you roll with it and LIVE with it.  Other people will give their 2 cents worth, but it comes down to what is going to work for YOU.  Go on disability, keep on working or going to school, use alternative treatments alone or combined with modern medicine, it's up to you.  Having a sense of humor about it all helps.  You'll have days where the world is your oyster and days where you put the world on hold, but finding little things to laugh at or be glad for helps a lot.  When push comes to shove, don't forget the chocolate.
    You have a whole heap of people here that are ready to lend a listening ear and cheer you on and we don't charge $300 an hour.  Good luck and don't be scared.  You are not alone.
  • capitolcarol
    Welcome to the group.  As mentioned already, you should definitely read everything you can about MS to try to understand it.  Be ready with your list of questions to ask the doctor and take good notes.  If there is something that you don't understand from doctor, ask him/her to explain it further.  If you are satisfied with that neurologist, fine.  But, you could go ahead and get a second opinion or try to look for a MS specialist.  Whatever makes you feel comfortable.  It's a rough journey, but there are a lot of us to help you along the way.