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How is MS diagnosed?

Hello,

This is my first time here. I had a few questions about Multiple Sclerosis, and how it’s diagnosed. I have been worrying that’s what I have for about a year, and had a lot of trouble finding a Neurologist, but finally I had some testing done in a recent hospital visit, and have an appt with them in 10 days.

About 2 years ago I started having severe anxiety and depression, and also uncontrollably crying at times, which I’ve never experienced before. I thought messing up words was due to medication, now I’m not sure. None, Joint and Nerve pain on and off, constant tingling in both of my hands(fingers). Balance issues at times. Very emotional and not able to calm myself down, which feels like extreme adhd since I can’t focus. I started having seizures again 16 months ago. A year ago when I checked, I had every early sign and symptom.

They did an MRI, CT Scan, etc. In the MRI, they found a white matter lesion in my right mid temporal lobe. The findings/impression listed demyelination as a possible cause. When I looked this up it said MS is the most likely cause of this.

I wanted to ask for help (which I greatly appreciate if you’re reading this). I know I can’t ask someone to diagnose me, I was just looking for some insight, and how it gets diagnosed. Thank you so much.

  1. First let me say welcome to our amazing community! We’re so glad to have you here! We totally understand the stress and mind wondering thoughts that come with getting the proper diagnosis. I want to share an article with you that may answer many of the questions and concerns you may have. You can access the article here- https://multiplesclerosis.net/living-with-ms/diagnosing-isnt-easy-why. Getting diagnosis isn’t so easily explainlable because no single test can positively diagnose it. Other possible causes of your symptoms may need to be ruled out first to try to pinpoint exactly what it is you may be experiencing. I know eating for that day is so hard, but reading the attached article may give you some insight on things to look out for and ask at your visit. If you feel comfortable please keep us updated! All the best, Latoya (Team Member)

    1. Thank you for taking the time to answer, I will definitely read that article. I’ll keep you posted, I know the hospital wanted me to get an EEG (48 hour) within 5 days, so I’m hoping that will be done. I’m sending all my test results over to him, to know what to ask will greatly help thank you!

  2. Well, they did an mri on my brain. Found a Dawson's finger. Then they did a full spine mri. Found no lesions. Then they did a lumbar puncture. Came back positive. I meet the Mcdonald criteria for relapsing ms.

    1. Thanks for answering, do you mind if I ask what the reasons were you went to the doctor?

    2. My left eye was droopy with blurry vision. My tongue quit working. They first thought it was a stroke until test confirmed ms.

  3. Hi, and welcome to our home away from home! As for me . . . shortly after turning 41 in November of 1998, I came down with a really bad cold. We should call it an upper respiratory virus, one of the myriad pharyngitis ("cold"😉 strains, because it was quite severe. The cough was so dry, loud, hard, and hacking, my boss commented on how awful I sounded. I worked that way for about 2 weeks, when things went from a bad cough and not much else, to a numb, weak left arm from shoulder all the way down to the fingertips, and a weak left leg with a limp. Then came devastating fatigue and worsened cold symptoms. No OTC or prescription medications helped. So my nose constantly drained despite taking allergy meds such as Allegra-D and Claritin. Cold/allergy remedies such as Nyquil, Dayquil, and Benadryl, did nothing to take up the slack, either. They might as well have been placebos! I applied for and got short-term disability. My PCP didn't believe me, and when I demonstrated my gimpy walk, she said the limp isn't that bad! Not that bad? LIMPING ISN'T NORMAL, LOL!

    As awful as she acted towards me, she did refer me to a neurologist. When he set me up with home care, a self-administered steroid delivery system that had to be assembled into a Rube Goldberg-type contraption, like the one in board game Mousetrap. But my left hand was too weak and numb to assemble the stupid thing. Since I couldn't do it myself, the neuro admitted me to the hospital. After 5 days of testing and round-the-clock steroid infusions, I was release back home with prednisone pills and instructions to rest until I feel good enough to go back to work.

    But, although there was a lesion in C2-3 and C5-6, I also still had that systemic upper respiratory infection, and it skewed the results of the lumbar puncture. I was discharged with a diagnosis of cervical myelopathy of unknown origin. "If your symptoms come back, call us," was their only instruction. No follow-up appointment or testing. I was on my own to deal with the aftermath.


    I recovered 80 percent and went back to work 6 weeks later. I didn't flare again until 5 years later, in 2004. I had to go through another year of retesting, and in January 2005, I was given an MS diagnosis and started on Copaxone. There's more, but those are the happenings in the early years.

    Sometimes I wonder if I wouldn't have flared again in 2004, had I been started on a DMD right away in 1999 without a diagnosis. But that was before they started diagnosing CIS (clinically isolated syndrome) and treating it with MS DMDs. But hey, it's all good. Disabled but thriving, that's me!

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