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MS or not ?

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    MS or not ?

    has anyone been diagnosed and treated for MS and then have the diagnosis questioned? i was diagnosed 2 years ago and treatments included avonex and neurontin. pain, fatigue and numbness issues sent me back to my neuro this week and he now questions the diagnosis and wants RA and lupus blood work done as well as my third mri.

    After two years of treating me he is now saying that my lesions are "atypical" and given my age is not convinced they are MS related. He also is sending me to a pain clinic because "the pain is not typical of MS pain".I am so frustrated with this as he was the one to diagnose me initially and i have been through the many ups and downs of denial, acceptance as well as tests, tests, tests!

    He has done blood work twice since my diagnosis and I dont think results can change?I'm sure all of us would rather not have ms but I'm beginning to almost wish they would just say yes you have ms and treat me rather than me have some kind of false hopes. My neuro is a MS specialist in my area but does anyone think I should go for a second opinion?

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Hi escrim,

    Getting diagnosed, un-diagnosed does happen. Sometimes a MS diagnosis is correct and sometimes a MS diagnosis is incorrect.

    I am not sure how often it happens in the "real world" but it is seen from time to time on MS forums.

    I can only imagine the frustration, concern and fear you must be feeling.

    He has done blood work twice since my diagnosis and I dont think results can change?
    I wouldn't worry about this too much.

    Redoing blood work is a Neurologist who is doing his job. He is making sure there is nothing in blood testing that might indicate something other than MS or in addition to MS.
    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

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      #3
      I was diagnosed, undiagnosed, rediagnosed, diagnosis lowered and rediagnosed. Something like that -- it actually became a blur with neurologists not agreeing with each other on exactly what was going on. It's hard enough battling the symptoms, but battling the medical system is just an extra drain on your limited resources. We have a large "limbo" population here and many of the stories are horrendous. Now you are experiencing the pain of a potential "misdiagnosis" that many doctors try to avoid by leaving them in limbo. I'm sorry, it's a tough place to be.

      The National Multiple Sclerosis Society advocates therapy as early in the process as possible. Even after a single instance (Clinically isolated symdrome) they suggest you go on the medication believing the benefits of early therapy outweigh any potential risks. As for your initial diagnosis, all MRIs are read by a radiologist so their findings should have supported MS along the way. Pull out your old MRIs and you'll see what the radiologist wrote on your mris. For now, instead of focusing on the diagnosis or undiagnosis I would try to ensure your symptoms were being properly managed. Regardless of the eventual diagnosis; pain should be treated, depression should be treated, etc. My pain is treated by a pain management doctor and it really has improved my life.

      In some ways, it could be good that your doctor is reviewing your personal history and wanting to double-check things as you go. Like Snoopy, I think your neurologist is trying to do a good job for you. If you don't actually have MS you can dump your weekly shots and I'm sure that would be a bonus. You could also then focus on your real medical condition and hopefully reach a better quality of life. Repeating the blood work is also a good thing. The Lupus test(s) aren't completely reliable so you could have had a false negative result before. I don't mind them drawing blood provided they are actually looking at the results and it sounds like your doctor is.

      I personally like second opinions because you learn from each neurologist you interact with. They have different practices and depths of experiences that you can benefit from. I'd probably wait until you get the current round of tests completed and see what happens. Then if you still think it's necessary make an appointment with someone else and take a complete medical record with you. If not, they may be drawing more blood and sending you to even more test.

      I think most of us here can relate to your experiences. It's not a good place to be. For now, try to focus on the things within your control (sleep, eating, exercise, stress management, etc) and try to put this other stuff aside. Whether you have lupus, ms, ra or ALL or NONE the conditions taking care of yourself is still helpful. I hope you will keep us updated on your situation and I wish you well.

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        #4
        I think if you are asking if you should get a 2nd opinion then you should.
        Trust your gut.
        Diagnosed MS 11/2012
        2nd Opinion DX RRMS 9/2013
        1st Avonex Injection 10/13/2013
        .....just keep swimming...........

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          #5
          I relate

          I have been trying to get a diagnosis for over 2 years now. I was always healthy and now never have a "normal" day. I know there is something very wrong, but can't get a diagnosis even though multiple docs say they suspect ms. It's frustrating, depressing and scary feeling like your body is falling apart. A diagnosis of MS sounds like a relief after you have been thru so many tests for everything else without a diagnosis. You feel like no one is believing you that you have anything wrong. Hang in there and try to find something that keeps your mind focused on something else.

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