What was the most challenging or frustrating part of your diagnosis?


Community Answers
  • karieland75
    11 months ago

    That NO ONE around me understands!!!!!!!!!!!! and my unsure future…

  • Joelle Buck
    11 months ago

    Within two years of my diagnosis my youngest six year old daughter was removed from my custody because my health issues were so bad I was unable to take care of both of us I still have not had had her living under the same roof it’s been 8 years then shortly after that I was diagnosed with MRSA in my bloodstream and almost died turn septic

  • mamaknits
    11 months ago

    After getting my diagnosis at 47, my so-called neurologist told me to “just keep living your life and don’t think about it.” How do I not think about it? Almost every aspect of my life has changed and I am symptomatic every day. Luckily I found a fantastic MS specialist who treats me as a whole person and respects what I’m feeling, both physically and emotionally. Oh and that so-called neurologist just up and closed her practice soon after I left.

  • Christina Hegarty PT, DPT moderator
    11 months ago

    Hi @daisymom,
    It sure can be frustrating to have a doctor who doesn’t take the time to understand the emotional aspects that come with MS! I’m so glad you found a great MS specialist who truly listens and respects you as a whole person! Thanks so much for sharing with us here! We’re glad you’re a part of our community 🙂
    Best,
    Christina, MultipleSclerosis.net Team

  • Riya
    11 months ago

    Sometimes
    I just want to commit suicide…

  • Kelly McNamara moderator
    11 months ago

    Hi @Riya. We’re so sorry you’re feeling this way and commend you for sharing so honestly here! We also encourage you to reach out for support from in-person options as well, including counselors, medical professionals, support groups, and more. The Multiple Sclerosis Association of America (MSAA) and National MS Society offer online, in person, and toll-free support resources: MSAA – https://www.msconnection.org/Support / MS Society – https://www.nationalmssociety.org/Resources-Support. If you ever need it, please do not hesitate to the National Suicide Prevention Lifeline online at https://suicidepreventionlifeline.org or over the phone 1-800-273-8255. Please know you’re not alone in this! – Kelly, MultipleSclerosis.net Team Member

  • Riya
    11 months ago

    I don’t want to suffer from this disease

    I already suffered from blood cancer

  • Alina Ahsan moderator
    11 months ago

    Hi Riya,
    I’m so sorry you have had to cope with both MS and blood cancer, I can’t imagine what that must be like! MS can be a huge load to bear by itself, and I truly appreciate you being part of our community and sharing your feelings with us because there are so many others that are feeling the same way. We’re so glad you found us here and please keep us updated on how you are doing!
    -Alina, MultipleSclerosis.net Team Member

  • Riya
    11 months ago

    Nothing will positive with me

  • caya1430
    11 months ago

    It took three neurologist and a year and a half for a diagnosis. A year and a half of torture, pain and frustration! “If it looks and acts like MS, then it is MS!” was my response. I was relieved because I knew for many years, something was wrong with me. I accepted it. It is true, knowing is easier to deal with.

  • Erin Rush moderator
    11 months ago

    I am sorry it took so long to get a proper diagnosis, @caya1430. Unfortunately, that seems to be a pretty common occurrence for our community members. I am glad you got diagnosed and can get the treatment you need to manage your symptoms. Thank you for sharing and for being a part of the MultipleSclerosis.net community. Best, Erin, MultipleSclerosis.net Team Member.

  • Renee
    11 months ago

    Amount of time it took to be diagnosed. Attempting to explain a disease, no one can see to family and friends, and trying to disern all misdiagnosis and medication impact on my health. Hardest acepting my new reality.

  • Erin Rush moderator
    11 months ago

    Hi @Renee! I know so many of our members can relate to what you shared! A long road to diagnosis is not unusual in this community. And trying to educate others about MS can be really challenging, to say the least. It can be very hard to adjust to a new reality like life with MS. Please know you are not alone! Thank you for sharing! Best, Erin, MultipleSclerosis.net Team Member.

  • msbeast
    11 months ago

    How advanced it has become for my mom as you know I’m her daughter speaking for her youngest daughter and I was her caretakers and his 2001 my name is Amy. Right now I would just say that the worst part of it is that she’s not able to speak or not able to understand anything so I wish that she would be able to speak and I wish that she can use her right hand to eat without getting assistance and I pray that she will be able to transfer from her wheelchair to the passenger seat of my car so that we can go and get coffee or lunch at Panera together again. Right now I just pray that I’ll be able to give her a good shower at the nursing home without her struggling during the transfer

  • Rebel
    11 months ago

    It took 2yrs. And several drs to get my MS diagnoses. I overheard one dr say to another, “she doesn’t fit the criteria.” I later learned the reason why. I’m black and 48yrs old. my age. He was a neurologists/ass! When I finally got diagnosed, I cried, I was so relieved that I had a diagnosis! I had one dr tell me it was all in my head and that I needed to see a psychiatrist!!! Lol Believe me I wasn’t laughing at that time.
    MS SUCKS!! I HATE IT! But thank God I’m here, above ground. It’s a dat to day challenge for me.

  • Christine F moderator
    11 months ago

    Thank you for sharing, @Rebel! I am glad you were finally able to find a doctor who listened to you and were able to get a diagnosis and can get the treatment you need to help manage your symptoms. Thanks for being a part of the community! Thinking of you! Christine, Multiplesclerosis.net Team Member

  • Tina
    11 months ago

    I JUST WANT THIS TO BE OVER, KNOWING IT NEVER WILL.

  • OMGillian
    11 months ago

    SAME

  • Kelly McNamara moderator
    11 months ago

    Hi @Tina. I can’t imagine everything you’re going through, but please just know there’s always someone who’s willing to listen and to hear you. If you ever feel like you need help, don’t hesitate to reach out. We’re all thinking of you. Sometimes online support comes a little easier, and the community’s here whenever you need. – Kelly, MultipleSclerosis.net Team Member

  • southernsullivan
    11 months ago

    After several years of seeking a diagnosis for my bizarre, but rapidly progressing symptoms, I was relieved to finally receive an MS diagnosis last year – at the age of 54.

    Finding a neurologist in my health insurance network who is willing to treat my progressive MS and advocate for a more aggressive MS therapy has been and continues to be the most frustrating part for me.

  • Kelly McNamara moderator
    11 months ago

    Thanks for sharing @SouthernSullivan. It’s funny how sometimes a diagnosis can bring upon a set of relief. Dealing with insurance and advocating for yourself can be super frustrating. If you ever have any questions or just want to vent with others in the community, know you’re always welcome to! – Kelly, MultipleSclerosis.net Team Member

  • kimtone
    11 months ago

    Finding a good neuro. The one that diagnosed me with MS said my biggest problem was that I was a woman. No joke…being a woman outweighed being diagnosed with MS! Actually, now that I think about it, I am grateful to him for fueling that fire in me so that I breezed right through the diagnosis unbelief/grief and just got on with proving my salt as the old saying goes. *wink wink*

  • Kelly McNamara moderator
    11 months ago

    No one should ever have to deal with that @kimtone. I’m so sorry you had to! Thanks for sharing with the community. Hearing everything you have said helps others to know they’re not so alone! – Kelly, MultipleSclerosis.net Team Member

  • Bettybeem
    11 months ago

    It was a relief to finally know what was wrong. The known is easier to deal with than the unknown.

  • Camaroluvr70z28
    11 months ago

    100% agree….I’ve had symptoms for at least 5 years and have been severely misdiagnosed…it was my opthamologist who finally diagnosed it 2 days ago…optic neuritis sealed the deal…had a CT Scan August 2015 that showed multiple lesions but was diagnosed as Cerebrovascular Disease only….so grateful to finally have the right diagnosis to get the right treatments!

  • Christine F moderator
    11 months ago

    Thank you for sharing, @Bettybeem. Many community members feel the same way and can relate to that sense of relief at finally getting a diagnosis. Thanks for being a part of the community! Best. Christine, Multiplesclerosis.net Team Member

  • SK74
    11 months ago

    I JUST WHAT TI KILL MY SIFE

  • Kelly McNamara moderator
    11 months ago

    Hi @SK74. I know it’s hard for others to understand everything you’re going through, but please know you’re not alone. Help is always available, if you ever feel like you need it. Here are a few resources that are here to help:

    – The National Suicide Prevention Hotline at 1-800-273-8255 or online at http://www.suicidepreventionlifeline.org/
    – Local options such as medical professionals, counselors, or support groups
    – MS society’s peer-to-peer support resource: https://www.msconnection.org/Support/One-on-One-Peer-Connections.
    – The Multiple Sclerosis Association of America hotline and online chat: http://mymsaa.org/msaa-help/mschat/.
    – Also, if texting is easier, the Crisis Text Line is a great resources.You can reach them by texting 741741.

    I applaud you for being so brave and sharing how you’re feeling so honestly.

    Warmly,

    Kelly, MultipleSclerosis.net Team Member

  • Raer
    11 months ago

    I just remember being so scared, not understanding what was going on

  • Erin Rush moderator
    11 months ago

    Hi @Raer! I think that time of being newly diagnosed can be so overwhelming and frightening. It can be hard to grasp the potential health challenges and the treatment options and all of the other information that comes with a diagnosis of MS. Thank you so much for taking the time to share your personal frustrating moment with the community! Best, Erin, MultipleSclerosis.net Team Member.

  • jn99
    11 months ago

    Getting past the depression. I was terrified of what I didn’t know and what I suddenly couldn’t do.

  • LeanneM
    11 months ago

    Trying to get a diagnosis. I have been in limbo now since the 90’s, when the Military Dr’s started telling me I “might” have MS. I went to a neuro in 2002, only to be told by him that because HE didn’t diagnose me, I didn’t have MS.
    That is where things have stayed since then. Due to lack of health insurance, the economy went down and I got laid off.
    I still live with the symptoms, and manage them -without any Dx or Rx. All of my management as been through diet, supplements and being mindful of the MS triggers. I may never get a Dx. 🙁

  • Erin Rush moderator
    11 months ago

    Good grief, @LeanneM! I don’t blame you for feeling frustrated! That is a long time to go without a proper diagnosis.

    I am sorry the economy and lack of health insurance have made it impossible for you to get a diagnosis. I hope the new year brings some changes and allows you to get the medical care you need.

    Thank you for sharing! Best, Erin, MultipleSclerosis.net Team Member.

  • 25651se
    11 months ago

    Waiting for the diagnosis. I was scared I had a brain tumor due to family history.

  • Tjoo33
    11 months ago

    Accepting that you have it

  • Christine F moderator
    11 months ago

    Hi @Tjoo33 thank you for sharing! Adjusting to life with MS and accepting the changes that come with that diagnosis is hard. Please know that you are not alone! Thank you for being a part of the community. Best, Christine, Multiplesclerosis.net Team Member

  • wandaholt
    11 months ago

    So true for me. I had a great job I was a health nut and living a good life with just mild symptoms. Optic neuritis and an MRI quickly diagnosed MS. I couldn’t believe it and wanted to fight back. Then I pretended it really wouldn’t cause much change. But that heavy lesion load finally won. After 12 years my life is totally changed.And acceptance is vital to keep going

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