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  • kristeninprogress
    My neurologist and the MS Specialist I have seen both believe I have a Conversion Disorder, but both have been dismissive and slightly condescending. My Primary Dr believes I have MS, and he is caring and has been with me since the beginning. I have considered the possibility of my symptoms being caused by stress/ PTSD, but I have relatively low stress, and I haven't had any recent events or triggers to connect with. I know myself and how anxiety and depression affects me, and I just can't seem to accept the Conversion Disorder diagnosis. MS, however, has explained all of my symptoms, and my gut instinct is telling me that this is what is causing my symptoms. The only problem is, none of my scans show any evidence of MS.

    I know that 5% of MS patients don't have lesions show up initially, so could I be one of those 5%? Is there anyone on here that has been one of those few and can tell me how you came to your diagnosis? Is there anyone that was misdiagnosed with Conversion Disorder? How did that diagnosis change? Is there anything else I can do to try to get help from my doctors? SOS!

    Muscle Spasms and Twitching
    Pain (muscles and lower back)
    Electrical pain down spine
    Strange sensations (frozen, burning, itching, tingling)
    Difficulty getting words out (lasted two weeks then improved)
    Dizziness and Balance issues
    Difficulty walking (I use a cane)
    Muscle weakness
    Babinski Reflex
    Positive Romberg
  • MS_Navigators

    I am so sorry you are experiencing this. You may want to consider going to another doctor - you can search for neurologists and other MS specialists in your area here: Find Doctors and Resources. If you have any questions, please call 1-800-344-4867 to speak to an MS Navigator.

    Warm Regards,
    MS Navigator
  • kristeninprogress
    Thank you, I think you're right. Searching now! 🙂
  • AnyBeth
    I wasn't diagnosed with conversion disorder, but it's true that some of my symptoms that had been attributed to mental illness were actually part of my MS and needed to be treated in a different way. My journey to an MS diagnosis began when a fairly persistant symptom that I couldn't possibly control popped on the scene. For me, that was a constant arrhythmic tremor in my left arm. That's a huge red flag for a thorough neurological exam.

    I have no idea if you have MS. And it is entirely possible that conversion disorder or another mental illness could account for some of your symptoms. But list of symptoms does include a huge red flag that something else is going on. As far as I can find, mental illness cannot change the plantar reflex. If stroking your sole with a thumbnail (or somesuch) makes your toes fan out, that positive Babinsky sign is something mental illness can't make. So, small as it is, I'd focus on that sign because it's the one thing impossible to fake. It's the thing that clearly says something else is going on.

    Ah, but my search did come across one other thing that might not need a neuro to diagnose and treat. Ask your doctor to check your folate/folic acid level, as that may be the one thing that's associated with both mental illness and a positive Babinsky sign. DO NOT, I repeat, DO NOT just start taking folic acid without medical guidance. Too much not only produces symptoms of its own, it also may interfere with absorption of other nutrients. So, check your B9 and treat if necessary.

    If your toes still fan when B9 is fine, get thee to a neurologist. Babinsky sign is coming from something that's not mental illness, and maybe some other symptoms are, too. Let's not bother about which ones are in which category just now... only that it's true that something else IS going on.
  • kristeninprogress
    Thank you! My blood work was done right before, and everything was normal, including folic and B9. My toes still fan out. 😔 My neurologist saw it, and we're getting scans of my cervical spine and T spine (for an old syrinx check, last scan in Jan was normal) in two weeks. I hate to say it, but I'm hoping for something to show up. They have me on Cymbalta and Gabapentin, which is helping with the pain (mostly), but I feel like there's more we could do if we had a definite diagnosis. Do you know how long it took for lesions to show up on your scans?
  • mostlyanon
    You mentioned PTSD, and I’m not sure your treatment history there, but I wanted to mention something I discovered on my own journey. I was battling anxiety and depression for years, on Lithium and benzodiazepines. After an event, I began researching my meds and it turned out that almost everything I was experiencing could be traced back to my meds. Lithium will mess with balance, your ability to speak, the meds will cause tremors, etc. Researching benzodiazepine withdrawal was eye opening.

    I’d trust my primary care doctor and still pursue finding a neurologist you trust and like, but if your on meds, I might also reevaluate them with my doctor, as well. In any case, best of luck with everything.
  • kristeninprogress
    Thank you. I've had a hard time accepting a Conversion Disorder diagnosis because I don't believe that I have PTSD. Stress, yes, but no more than the average parent, I believe. I wasn't medicated before I began showing symptoms. In fact, I didn't take medicine until almost a year after my first symptom (fatigue and muscle pain). It wasn't until I was hospitalized in February that I began amitriptyline, but switched to Cymbalta after noticing severe adverse reactions. When symptoms kept progressing, I was put on Gabapentin. So far, I'm having more good days than bad, but the symptoms are still always there. ☚ī¸

    I have another appointment at the Mayo Clinic in September, and I'm hoping for some direction on the next step, but I'm searching for a new neurologist locally. 🙂