Coping With and Accepting an MS Diagnosis

Hearing a doctor tell you that you have MS can be overwhelming for several reasons. There is a great deal of information to digest right away, including details about the disease itself, what sort of treatment(s) you will need, what your insurance will cover, what type of doctor you should see, etc. Talking to other people with MS who have gone through an experience that is similar to yours can be extremely helpful. We received a question from one of our community members who was recently diagnosed with MS, and several other members of our community responded with valuable tips for facing the road ahead.

Community question:

Hi, I’ve gone to an ER twice in 5 weeks and they are sure that I have MS. Due to insurance problems I haven’t been able to see a neurologist yet. I start my new insurance in a couple days. I was wondering when searching for a doctor what are some good questions to find out if they are going to be a good doctor for me. I’ve rarely gone to see doctors my whole life so I don’t know what I should be looking for. Thank you for any and all help.

Community member response:

You are truly facing some of the hardest parts of having MS–finding the right doctor and the right medication. I am a retired nurse and I have always told anyone asking that if you do not feel your doctor is listening to you–no matter how nice they seem–they are not the doctor for you. You must also feel you can talk with your physician openly and honestly.

Since all MS patients have slightly different symptoms, go prepared to tell your doctor what changes you have noticed about yourself–weakness, fatigue, visions problems, etc.

  1. If you do not already understand what MS is, be sure your doctor tells you and that you understand it and what you can expect in the future.
  2. Ask what type of MS you have and what your treatment options are for your type of MS–and what your doctor recommends.
  3. Ask how your treatment works and what you should expect from it. What side effects might you experience and how are you to deal with those.
  4. Ask how your other symptoms (fatigue, weakness, bowel/bladder problems, etc.) might be addressed.
  5. Ask what the difference between a relapse and an exacerbation of your MS is and when you need to call your doctor to report one of these.
  6. Vitamin D levels are not uncommonly low in people with MS. Low D levels can affect your mood and healing abilities. You should ask if your doctor will check yours and find out if you need to take any additional Vitamin D.

If your neurologist agrees, it would be wonderful to have your significant other attend your first appointment with you. He or she also needs to understand your illness, your treatment and what to expect from both in the future. He or she is also very worried and may also have questions for your doctor, too. I remember how grateful my husband was that my neurologist invited him to join us so he could hear everything I was being told and could ask any questions he had. He had no idea what MS was and this really helped him. It was also nice for me to have my husband hear what I was told. You get a lot of new information at your first visit and it is hard to remember it all! My husband helped me our when I forgot things.

Good luck to you!

Community member response:

Hi, I was diagnosed in 2006, went 6 years in denial, and after another exacerbation in 2012 decided it was time to face reality. I started on Avonex and now I am considering another therapy. My biggest problem with Avonex is depression, I can handle the injections but the depression is overwhelming at times. I have a neurology appt. in a few weeks, and plan on talking with her about this. Do you think it is worth changing therapies over because I know it is helping my ms?

Thank you for any feedback on this.

Community member response:

The week I found out I started “therapy” right away. I was “lucky” in that I have a great Dr who really listens to me and all my issues. I started on Copaxone despite the fact I HATE needles in every way. I was very good about doing the horrible injections, using the autojet, etc.

Then I was invited to participate in the study for Gilenya. A PILL! Music to my ears! The first phase I was in I had to keep taking Copaxone (so I really felt like it was no real study at all). The next phase I had to be willing to give up taking Copaxone. Ah, no shots- NO WORRIES! They monitored me like a hawk- eye exams, heart tests, MRI- etc. All came back great. After the study while it went through the final FDA approval (I’m in the US) they gave me the option to stay on. YES, it was simple for me. I have other meds I take for other issues so adding another “pill” is just not difficult. If I have found anything is that you need to write down anything and everything you think about asking before your appointment so you can have a good appointment and not a -”How are things?” – You- “Good” -”Okay, see you in XX months”… “Okay”. Then it hits you on the way home… what just happened? Dr.’s can’t treat what they don’t know.

Best of luck!

What advice would you give someone who has been newly diagnosed with MS? What do you wish you knew when you were first diagnosed? Please share your thoughts with us in the comments!

Comments

View Comments (1)
  • north-star
    4 years ago

    The advice in the article is all great! Some things I’ve learned:

    A specialist who does / participates in research will keep up with current findings and may even steer you to a promising study. There’s so much junk science floating around it’s important to have a trustworthy neurologist who can explain your questions and concerns. Welcome to the world of vitamin supplements, crazy surgeries, etc., etc., etc., that will come to you via email from well-meaning friends and relatives. Being able to say “my neurologist is a researcher, we’ll talk about it,” leaves your friends feeling good that they’ve helped and you’re not on the spot about your treatment plan.

    If you’re close to a hospital or clinic with an MS center, check it out. Over your full and busy life with MS you will benefit periodically from physical (PT) and occupational therapy (OT). As your MS changes you will need help: adjusting your routine, your walking may change, your tolerance for exercise will vary. It’s possible you could experience pain that a physical therapist can help you with. Insurance may even pay for some therapies including massage. I learned to drive with hand controls with an amazing OT who also gave me some help redesigning our kitchen. MS centers specialize in your particular issues.

    If you are near a medical school, you can be a regular subject of research studies yourself. I learned about exercise options in one study and even got a free DVD of exercises for three stages of MS: still walking-balance good; need to hold onto something; need to sit.

    I’ve been lucky but also proactive. There has never been a better time to have MS: you can buy almost everything online, there are lots of resources like this website; the ADA means you can find accommodation at movies, concerts, getting in and out of buildings. And get a disabled parking placard!! If someone gives me a ride, we park right near the door/elevator!!! Ask your doctor to help you with the paperwork!!!! This is one of the few bonuses that come with MS. When I was livelier, a woman said she wished SHE had a parking placard. I said right back “Trade you places in a heartbeat. Seriously, take my MS … ” as she scuttled away, embarrassed as she should have been.

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