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Hoping for answers

  • By nora83

    About 12 years ago I had an episode where I had trouble speaking. I couldn’t say my ‘s’ sounds correctly and it was like I had marshmallows in my mouth. It went away after about a week. I am now 35 and for the past 6 years I have been plagued with almost constant lightheadedness, fatigue and balance issues. Occasionally I will have tingling fingers, but nothing more than that. It has gotten worse over the years. My eyes move involuntarily, I’ve had another episode of speech difficulty last month, bladder control issues, and extreme fatigue. I’ve been to 2 neurologists, had several tests done (one pointed to autoimmune but it was normal when it was done again), been to ENT, have been diagnosed with at least two different things that neurology and ent ruled out.

    I’m tired of being a mystery. I was just wondering if someone here had the same experience as me. I know no one can tell me that is MS for sure without tests, but at least I won’t feel crazy if I find I’m not the only one going through this.

    Thank you

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  • By Shelby Comito Keymaster

    I am sorry you are still searching for an answer for these symptoms,
    nora83! Unfortunately, that’s a common theme here — the long road to diagnosis. You are definitely not alone in that! Here are some articles both on speech-related issues and on how difficult it can be to get a diagnosis: https://multiplesclerosis.net/living-with-ms/fear-phone-speech-related-issues-ms/ and https://multiplesclerosis.net/living-with-ms/diagnosing-isnt-easy-why/

    Also, here is a list of conditions physicians will want to rule out when searching for an MS diagnosis that you may want to make sure your doctor is testing for – https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions/
    I do hope you get some clear cut answers AND some feedback from our community members as well.

    Best, Shelby, MultipleSclerosis.net Team Member

    reply
  • By Shirley

    Nora,
    My story started out similarly to yours, but after 2 & 1/3 years of going from doctor to doctor I finally got a diagnosis of MS. I was actually happy then! I’ve been diagnosed since 1980, probably before you were even born, and am still walking. I’ve heard several neurologists say that they start a patient they only suspect of having MS on one of the many treatments out there right away. If you could get with an MS group, someone will undoubtedly have a good recommendation for you. Also, please try to keep from getting overheated. For me, that will always trigger fatigue, balance issues, lightheadedness and general BLAH. Air conditioning is my friend!

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  • By vincenzo

    I would also be pushing as hard as possible to get a brain and spinal cord MRI. From my experience this was a pivotal element in my MS diagnosis. GP’s are often restricted in ordering these scans but if you can afford the out of pocket expense it would be money well spent.
    Hope all goes well

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  • By aligates123

    Yes!
    3 years worth. Sometimes you can have it, but until there is actual “evidence” like an MRI with lesions or an abnormal spinal tap, they will not diagnose you. I’d been having symptoms for a long time, had seen many different kinds of drs and had many tests done. Just keep intermittently going back. There was nothing on my first 2 MRIs, but bc of everything my dr had another one done and lesions were present. I then had a spinal tap and myelin protien was high, so we finally have the answer. Be persistent and don’t feel like you’re crazy.

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