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A MS limbo, another illness limbo or a psychiatric disorder

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    A MS limbo, another illness limbo or a psychiatric disorder

    Hello everybody,
    I want your critical and analitical thinking regardig my case.

    I am from Romania so my english may be a bit off. Sorry in advance.

    It all started in 2014 when I was aged 20. I noticed a mild numbness in my lower part of the right leg which I and the doctors attributed to multiple disc herniations in my throracic and lumbar spine portions.
    Then this numbness progressed to my right arm. Had a full brain spine MRI that showed the disc herniations.

    After that hell broke loose and I developed numbness and a subjective weakness almost everywhere in my body. So the discs herniations weren't to blame.
    At the beginning of 2019 and until now my mom has spent over 15.000 euros on analysis. Been at 6-7 neurologsts, done several brain and spine MRI's at 1.5 T and 3 T with and without contrast, 5 EMG's and netve conduction studies (NCS), all the blood analysis, 6 or 7 neurologists has seen me for the objective exams, done genetic testing for Spinal Muscular Atrophy, for Kennedy's disease, motor evoked potentials, visual evoked potentials and Whole Exome Sequencing (that I wait the result of).


    I have a psychiatric history starting from the age of 15 when I went on sertraline and then continued with alprazolam and zolpidem plus several anytipsychotics.
    All the medical comunity (neurologits and psychiatrists) have come to the conclusion I have somatisation disorder (psychosomatic disorder) coupled with a long use of benzos and sleeping pills (3 years aprox) that have disrupted the way my brain functions or that I'm stressed.

    However there is a twist to the story.
    The only thing they found at the brain MRI's which remained stable across time were these 2-3 non-specific white matter hyperintensities (demyelinating micro-lessions of 2mm) which are most probably of vascular origin. All the neurologists stated that those happen in anyone and they are asymptomatic (healthy people get 1 aprox every decade).
    So all of them have said no MS. They said it with so confidenced no one wanted to do a spinal tap to see if it's negative.

    Meanwhile my symptoms (tremor, muscle twitching, numbness, a feeling of heavy arms and legs) are getting worse.
    Again they are getting worse but they do not show on regular examinations.
    If you were to see me in real life you would see me as a healthy guy that fatigues a bit too fast.

    So here I am after more than 15k euros spent and no answer besides you have a history of psychiatric problems and attempted suicides by hanging. No one will ever take me seriously now.
    But maybe they are right. Those micro-lessions might not be MS related but then again I get worse and worse and less functional.

    My last attempt to find an answer was to contact a medical clinic in Bucharest who has a partnership with Charite University-Hospital in Berlin. They denied mt entry not thinking there is more to be done.
    So what are your guys thought on my health. Is it:
    -MS
    -Psychiatric
    -Neurological but not MS, maybe something more rare.


    I might have missed something from the story because there is so much data but roughly speaking this is the state I am in right now.
    Thank you in advance!
    Robert Nicula, 26y

    #2
    Hi karenin08 and welcome to MSWorld! Glad you found us, but none of us are qualified to determine what is the cause of you ailments. It sounds like you have gone through a lot of challenges in your young life and I'm sorry to hear this.

    MS can be tricky to diagnose because many times other conditions need to be ruled out first. The National MS Society (of the US) has an article here for the criteria for diagnosing MS https://www.nationalmssociety.org/Sy.../Diagnosing-MS

    Other conditions might have to be ruled out as mentioned above. https://www.nationalmssociety.org/Sy...ns-to-Rule-Out

    Have you contacted the MS Society in Romania? They might help you navigate through the process there. It lists a contact person to email or call. https://www.salto-youth.net/tools/ot...is-society.81/

    I hope you can get the help you need, regardless of your diagnose.
    And by the way, your English is excellent!

    Please take care and stay in touch
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Hello Robert ~

      Thank you for sharing what you're dealing with. I'm sorry that you have troubling symptoms to cope with.

      Originally posted by karenin08 View Post
      At the beginning of 2019 and until now my mom has spent over 15.000 euros on analysis. Been at 6-7 neurologsts, done several brain and spine MRI's at 1.5 T and 3 T with and without contrast, 5 EMG's and netve conduction studies (NCS), all the blood analysis, 6 or 7 neurologists has seen me for the objective exams, done genetic testing for Spinal Muscular Atrophy, for Kennedy's disease, motor evoked potentials, visual evoked potentials and Whole Exome Sequencing (that I wait the result of).
      You certainly have had many professionals evaluate your situation.

      Originally posted by karenin08 View Post
      I have a psychiatric history starting from the age of 15 when I went on sertraline and then continued with alprazolam and zolpidem plus several anytipsychotics.
      All the medical comunity (neurologits and psychiatrists) have come to the conclusion I have somatisation disorder (psychosomatic disorder) coupled with a long use of benzos and sleeping pills (3 years aprox) that have disrupted the way my brain functions or that I'm stressed.
      From my perspective, if all the neurologists and psychiatrists are in agreement about your diagnosis, it sure would be very difficult to challenge their conclusions.

      Originally posted by karenin08 View Post
      Meanwhile my symptoms (tremor, muscle twitching, numbness, a feeling of heavy arms and legs) are getting worse.[/FONT]
      [FONT=inherit]Again they are getting worse but they do not show on regular examinations.
      If you were to see me in real life you would see me as a healthy guy that fatigues a bit too fast.
      Robert, what you describe can fit with having somatization disorder (which is what you were diagnosed with). Your symptoms are real.

      "Somatic symptom disorder (SSD formerly known as "somatization disorder" or "somatoform disorder") is a form of mental illness that causes one or more bodily symptoms, including pain. The symptoms may or may not be traceable to a physical cause including general medical conditions, other mental illnesses, or substance abuse. But regardless, they cause excessive and disproportionate levels of distress. The symptoms can involve one or more different organs and body systems, such as:

      Pain
      Neurologic problems
      Gastrointestinal complaints
      Sexual symptoms
      Many people who have SSD will also have an anxiety disorder.

      People with SSD are not faking their symptoms. The distress they experience from pain and other problems they experience are real, regardless of whether or not a physical explanation can be found. And the distress from symptoms significantly affects daily functioning."

      https://www.webmd.com/mental-health/...es-treatment#1


      Robert, I don't know if you have somatization disorder, or something else.

      But it wouldn't hurt to get cognitive therapy, and learn stress reduction. Maybe these things will help, and show improvements.

      I'm sorry that you have this to deal with, Robert.

      Take Care
      Last edited by KoKo; 09-01-2020, 06:22 PM.
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Hi Robert.

        Functional Neurological Disorder(FND) (conversion disorder, somatization disorder) have very real symptoms. There is an excellent website that explains FND and the symptoms it can cause -
        https://fndhope.org/fnd-guide/

        Your Drs. and testing are indicating you do not have MS. I hope you look into the website I provided then discuss with your Drs. how best they can help you.

        Take care.
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

        Comment

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