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2 years...no diagnosis?

2.5 years ago, when I was 20, I started having some really bad symptoms. Pain/numbness in my legs and arms, stiffness and tightness (especially in my chest), extreme fatigue and migraines, dizziness, memory loss, vision problems, weird tingling in my arms/legs...the list goes on and on. A few months ago, I lost my vision for 2 days, was hospitalized, and had some MRIs done. I was told that I have white spots on my brain and a 1 cm lesion on my c6-c7 intervertebral disc. I was finally able to get in with a neurologist about a month ago and was told (very firmly) that I do NOT have MS because I'm showing no symptoms and there is no proof on my MRI. I was told I should be grateful and try to push through. I know that I'm young and a woman, but I feel like I am not being listened to or taken seriously, especially when I have had a MRI and a medical history of these symptoms impacting my quality of life. I'm no longer able to work because of my symptoms and my neurologist says that any further tests or treatment would be unhelpful. I'm not looking for medical advice, I'm just wondering....is this kind of struggle common when trying to get diagnosed? Am I crazy?

  1. No you're not. So many horrible doctors out there. I don't know if you have MS or not, but I'd get to an MS specialist. The MS Society maintains a list and I'd find the nearest one to where you live and make an appointment now. The wait may be long, but I'd schedule something ASAP. Sorry you're going through this.




    https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources?_ga=2.163977343.1970698425.1701448592-1766628380.1699290902&_gac=1.190948952.1701448592.CjwKCAiApaarBhB7EiwAYiMwqh6dnyenSqGr7gVaLwyCN-fUHZVbh7ove1y6WJTqTKtu6EC2uZCGQxoC2SsQAvD_BwE

    1. that's a great point. Getting a second opinion directly from an MS specialist could be really helpful! I think second opinions are always important, when it comes to a diagnosis like this.
      - Alene, moderator

  2. Oh, dear, ! I have some very strong opinions of the doctor who dismissed your concerns in such a disrespectful manner. But, I'll refrain from taking up your time sharing them and get to the heart of your question.


    First, it can, unfortunately, take a long time to get a proper diagnosis. That stinks and it shouldn't be the case, but it often is.


    Second, you have every right to seek a second (or third!) opinion!


    And third (and I will try to stay off my soapbox, here); just because you are young and a woman doesn't mean your symptoms should be dismissed. Obviously, something is going on in your body and it should be properly addressed. I always tell our community members, "YOU are the expert on your own body. No one knows your body as well as you do." So, you KNOW something is wrong. Don't let some doctor discourage you from advocating for yourself and your health.


    Please, I know it's exhausting, but don't give up your fight to get a proper diagnosis. Whether it's MS or some other condition, you deserve to have a diagnosis and treatment!


    I think offered some good advice and the link she provided is a great place to start.


    Please keep us posted on how things are going, if you feel comfortable doing so.


    Best, Erin, MultipleSclerosis.net Team Member.

    1. I'm so sorry to hear that you're dealing with so many symptoms and so many barriers in feeling understood. Getting an accurate diagnosis for any autoimmune disease is challenging, but especially MS because there's no one test that will definitively rule it out. Sometimes a doctor will order a spinal tap/lumbar puncture if there's a questionable diagnosis, so I don't know if that's an option for you to discuss with your doctor.


      Did you doctor offer any indication of what could be causing the symptoms? Even if he doesn't feel that it's MS, it seems that there should be some explanation for the many symptoms that you're having.


      If nothing else, I'm glad that you got connected with this community here so that you can talk with people who get it! The symptoms that you're experiencing are not insignificant, so you need the support of a community. We're glad that you're here. Please keep us posted as you feel comfortable doing so!
      - Alene, moderator

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