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What if my neurologist chalks up my myoclonus and other symptoms as anxiety… again?

Myoclonus is my main symptom and I’m worried about my neurologist appointment on Wednesday. This is my second attempt to find out what is going on. I was hospitalized 2 years ago for a string of neurological symptoms but the most noticeable was constant myoclonus. The doctor didn’t tell me what she was looking for but I had suspected MS. The MRI was clean and she told me after that she was looking for a tumour. I’m assuming that it also didn’t show lesions.

I thought gluten-free was the answer

Well, to try to keep the story short, my primary care doctor noticed an irregular result for gluten, so told me to try gluten-free. I did and noticed my symptoms receding within days. Within a year all symptoms were gone and I thought that was the answer. But they all came back in December, so my doctor referred me back to the neurologist and now I have to try to explain all my symptoms without making her think I am a Google MD and have diagnosed myself.

Worried it will be chalked up as anxiety

The ones I had in December are mostly gone except the myoclonus and this last week my eyes just won’t focus. I have searched a little bit on here and see that startle myoclonus is pretty prevalent but didn’t see anything about constant movement. Other symptoms I have had are not being able to find the right word or using the wrong one, not remembering how to do things I do every day, pins and needles feeling on my skull, and not sure if the sharp pain that shoots through my chest occasionally is part of everything… Anyway, this is no longer short, but I’m worried she will chalk all this up to anxiety like she did the first time. I am on Paxil now because I was having constant panic attacks in December as well.


Community Answers
  • corlynn author
    2 months ago

    Thanks for all the support. It does help. My primary care giver is a good doctor so I will talk to her next time I see her and discuss whether I should just rely on the neurologist report or see if it needs to be investigated further.

  • Kim Dolce moderator
    2 months ago

    @corlynn, I echo the other responses and add this:

    In the future, I suggest you ask your doctor for a copy of the radiology report each time you get an MRI. Radiologists interpret the MRI and make an exhaustive list of what they observe. Not all doctors (including neurologists) are good at reading an MRI, so they rely on the radiologist’s notes. Reading the report yourself gives you a reference from which you can ask follow-up questions.

    Another good reason to obtain the report is that your doctor won’t tell you everything that’s on that list. I discovered that when I started getting my own and saw that one radiologist observed an enlarged thyroid lobe and gallstones in addition to MS-related lesions, two things my neuro never told me. The doc only discussed my brain/cervical lesions.

    I hope you’ll continue to go to bat for yourself and try to find a doc that is willing to investigate further, keep an open mind, and take you seriously. All my best, Kim, moderator, MS patient

  • corlynn author
    2 months ago

    Thanks Erin. It was last Wednesday and no answers. She just read over the results from last time and did say it was all in my head. Politely of course but I guess I need to accept that and move on.

  • Shelby Comito moderator
    2 months ago

    Thanks for the update, @corlynn. Ugh, I can imagine that must feel so frustrating to hear – and your feelings are 100% valid! These symptoms must be alarming, and I definitely can see why you’re concerned. While I won’t begin to question your doctor’s expertise, you deserve to feel confident in your healthcare team and in the care you’re receiving. It never hurts to get a second opinion especially when it’s your health, and in fact, many others have shared how helpful getting a second opinion or even a third opinion can be, if that’s an option for you. Some have also shared that seeing an MS Specialist can make a big difference, too. Here are some tips some of our advocates have shared: https://multiplesclerosis.net/living-with-ms/my-advice-for-newly-diagnosed/ and https://multiplesclerosis.net/living-with-ms/advice-on-finding-a-good-neurologis/

    I hope this helps. Thank you again for reaching out and please feel free to do so anytime. We hope you’ll keep us posted on how you’re doing! – Shelby, MultipleSclerosis.net Team Member

  • Erin Rush moderator
    2 months ago

    Hi @corlynn!

    I do hope you get some clear answers about your symptoms! I don’t blame you for being concerned about having this chalked up as a symptom of your anxiety.

    It’s okay to seek a second opinion and to keep pushing for answers if you feel like your concerns aren’t being heard by your current physician.

    If your appointment was this past Wednesday (June 5), I hope it went well!

    And, if you appointment is this coming Wednesday (June 12), I hope your questions are fully answered and you get some clear cut answers (and possible solutions!) as to your current symptoms.

    Best, Erin, MultipleSclerosis.net Team Member

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