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Thread: New to the Group

  1. #1

    Default New to the Group

    Hello..just another frustrated person who has been suffering for nearly 9 years without a diagnosis.
    Long story short, been suffering with pain, optic neuritis (seen twice BOTH eyes) fatigue, fog, memory loss so on and so forth. Numerous MRIs, one lumbar, one EEG. I went to my eye MD a couple weeks a go because my eye sight is fading fast, especially in the left eye. He was thinking pituitary issue so asked me PCP to order labs. Instead he ordered yet another MRI. Came back with 2 small subcortical white matter hyperintensities in left frontal lobe...then says may be related to headaches (which I dont have and when I do its in the back of my head)---
    So, question is. .. these were not there at my last MRI...will this be enough for a much awaited Diagnoses? Of course you are thinking...why do you want the diagnosis? Honestly, because without it I look crazy...they don't treat my symptoms and as I said before, I sit here going on year 10 of suffering...
    Any advice is appreciated.

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  3. #2
    Distinguished Community Member BBS1951's Avatar
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    Is yourndoc an MS specialist.

    It took 18 years for my lesions to,show up. But I qualified for a dx sooner, based on other criteria, check out MacDonald MS criteria.

    Also did u use the 3Tesla MRI? It detects better than the 1.5.

    And Hello!

    https://en.m.wikipedia.org/wiki/McDonald_criteria
    Last edited by BBS1951; 08-22-2017 at 09:10 AM.

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  5. #3
    Distinguished Community Member Jeanie Z's Avatar
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    Smile

    :)Welcome Dontknowanymore! Check in frequently and let us know how you are doing. All the people on this board are nice and they have been a huge support for me. Jeanie :)

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  7. #4
    Distinguished Community Member agate's Avatar
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    Welcome, Dontknowanymore!

    It sounds as if it's been a long road for you. As you may have figured out based on what BBS said in this thread, a long wait for a diagnosis of MS is all too common. Unfortunately MS just isn't always easy to diagnose, and doctors hesitate to pin that diagnosis on a person.

    We can't say whether you have MS based on any diagnostic criteria but the revised McDonald criteria are the usual standard now, I think. You'll probably need to know how many attacks you've had, and this isn't always easy to determine.

    It sounds as if all of your medical care in connection with your symptoms might have been from your eye doctor?

    I really urge you to use a primary care doctor, who would be someone who is in internal medicine or general medicine or family practice, and that person should refer you to a neurologist, preferably someone who is an MS specialist. You should make sure that the optic neuritis diagnosis is mentioned in the eye doctor's records and that your primary care doctor and the neurologist are aware of both the optic neuritis and the MRI findings.

    Sadly, even if you are diagnosed with MS, there may not be very many remedies for the symptoms you mention but I hope that there will be some that will help you. However, the neurologist would probably want to start you on one of the disease-modifying treatments for MS as soon as possible.

    There is considerable evidence that these drugs are more effective if they're started soon after the onset of MS.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  9. #5
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    We are not at all surprised that you want to be diagnosed! It happened to most of us.

    Welcome to Brain Talk,
    ANN
    There comes a time when silence is betrayal.- MLK

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  11. #6
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    Took me much longer for diagnosis, however I did not even think of MS myself. I knew I had problems for years, but they would come and go. Finally, after having a worse one I took myself to a Neurologist and though I was unaware of it, he treated MS patients. So he came to diagnose me after much evaluation and many test.

    I can certainly understand wanting a diagnosis. Please seek, not just any Neurologist, but one who is a MS Specialist. It is very important because even many Neurologist do not understand MS, or think to look for it.

    Welcome to the forum. I hope you get answers soon.
    Virginia

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  13. #7
    Distinguished Community Member jendie's Avatar
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    Dontknowanymore,

    It took 14 years for me to be diagnosed with MS.

    Jendie
    I've been a member of this forum during its different incarnations since I was dx in 9/98


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  15. #8
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    I'm sorry that it's taking so long to get some sort of answer few r your health issues. Welcome to the forum.

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  17. #9
    Distinguished Community Member agate's Avatar
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    Bumping this up in case Dontknowanymore drops by
    Last edited by agate; 09-06-2017 at 09:06 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  19. #10
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    Welcome, Dontknowanymore. Now that you have found here, don't be a stranger.

    If you haven' t done it yet, make as complete a list as possible of all your symptoms, when they appeared and how long they lasted. Also what if anything was done. And which of your current problems bother you the most.

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