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  • Over 10 years of symptoms....not yet diagnosed!

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    Old 09-27-2008, 11:13 PM   #1
    protrainer38
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    Over 10 years of symptoms....not yet diagnosed!

    It's my first time on this board, and I can already see that there are plenty of folks here who can empathize with and offer me support.
    Just after my oldest son was born, almost 11 years ago, I started feeling sensations in my scalp that were tingly. I also started having episodes of dizziness while sitting in a chair with my newborn. At the time my gp and I wrote it off to post partum horomones.
    To make a long story short, over the years symptoms have accumulated and gotten more intense. I have been temporarily diagnosed with Meniers Disease, Benign Paroxismal Positional Vertigo, Episodic Ataxia and been told my symptoms were another manifestation of Migraine Headaches.
    Currently I suffer from the same intial head tingling, pressure and the 'sound of the ocean' in my head, lightheadedness, dizziness, weakness, heavy gait when walking, double vision, vision blackouts, arm and leg tremours, numbness in my hands, unbelievable extreme fatigue, itching, and the feeling of having all my nerve endings exposed at my skins surface. Most recently I have begun to stutter, struggle to recall words and have episodes of complete short term memory loss.
    I have had batteries of tests over the years, and I know my doctor looked for MS previously. I just finally went to him and 'gently demanded' that we look again. Given the descriptions of my newer symptoms, he was more than accommodating and explained that he really suspects that MS is the culprit and that it would just be a matter of time before the test results agree with us both.
    I am booked for another MRI in 2 weeks. (complete with sedatives because I am seriously claustrophobic!) He has ordered a 'bucket full' of blood tests and new appointments with the neurologist who had all but thrown his hands up in surrender just over a year ago!
    I'm struggling with my emotions. It's a relief to think that after all this time suffering from so many debilitating symptoms that there may be a real explanation and I'm not crazy. At the same time, it's not like I want a diagnosis of MS. I'm concerned that the next MRI will show nothing and I'll be back at 'square one'. AND, I'm feeling guilty for wanting the MRI to find something at all! Shouldn't I want them to tell me I'm okay? (even though I know I'm not?) Okay, maybe I am crazy!
    At any rate, has anyone ever heard of a doctor making a dx of MS without MRI findings? In other words, any chance they'll finally start treating my symptoms if the MRI comes up clear, yet again?
    Thanks for reading my very, very long first post!
    Cheers!
    Edit: Just read further into the threads on this board and see that suggestions are that I could indeed be diagnosed without any lesions showing on my upcoming MRI. This board is a wealth of information and support. I'm thrilled to have found it.

    Last edited by protrainer38; 09-28-2008 at 08:34 AM. Reason: Found some answers to my question further on the board.

     
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    Old 09-28-2008, 08:51 AM   #2
    Nenu
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    Re: Over 10 years of symptoms....not yet diagnosed!

    It's true. Some have been diagnosed without lesions on their MRI's.

    Be sure when they're doing the MRI's on you, they're checking all areas. Brain, spinal, optic nerve. It's also important that this is done with contrast injection. They may not have found my brain lesions without the contrast injection.

    I do hope you get some answers soon, that's a very long time to be suffering.
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    Old 09-28-2008, 05:19 PM   #3
    protrainer38
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    Re: Over 10 years of symptoms....not yet diagnosed!

    thanks for your input...I'll be better educated to guide my doctor with what I'm learning on this board, and that can only help, right?

     
    Old 09-28-2008, 06:46 PM   #4
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    Re: Over 10 years of symptoms....not yet diagnosed!

    Eons ago (lol, not that long ago) the notion of lesions was edgy and fascinating. It is good to hear that you have discovered info for yourself. Still, I can well understand how much stress you must feel by not knowing for 10 years. I can not imagine the time it would take. Considering your time, I know that my short time was a blessing indeed. I truly wish the same for you and I hope you can make a speedy determination to bring about some rest for your mind.

    BTW, welcome aboard!

     
    Old 09-28-2008, 07:12 PM   #5
    protrainer38
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    Re: Over 10 years of symptoms....not yet diagnosed!

    Thanks so much! It's great to be aboard!

     
    Old 10-01-2008, 06:15 AM   #6
    Bearygood
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    Re: Over 10 years of symptoms....not yet diagnosed!

    Quote:
    Originally Posted by protrainer38 View Post
    At any rate, has anyone ever heard of a doctor making a dx of MS without MRI findings? In other words, any chance they'll finally start treating my symptoms if the MRI comes up clear, yet again?
    Hi, protrainer. I've never gotten the impression that Canada was a little looser than the doctors down here but in the U.S., it is not easy to get a dx without meeting the McDonald critieria. If you're not familiar with it you should look it up (the revised 2005 critiera) and I actually think there might be a link to it provided in the post at the top of the page, "The Differential Diagnosis..." The thing that's might be a little different for you is that you have a long and (it sounds like) well-documented history. Still, there are a lot of diseases that can mimic MS. A lot of those are cited in the same article.
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    Last edited by Bearygood; 10-01-2008 at 06:16 AM.

     
    Old 10-02-2008, 09:56 AM   #7
    protrainer38
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    Re: Over 10 years of symptoms....not yet diagnosed!

    Thanks Beary...printed the Differential Diagnosis Article and read it through. Thanks for the suggestion. While it is a lot of information to take in, I'm so glad I read it. It really helps to aleve the frustration I've felt with the medical system in trying to dx me with something! It's just incredible to see all the 'mimics of MS' that doctors are up against! And frankly, taking the frustration out of it is a HUGE deal. And it also makes me feel like I can discuss the issues with my doctor more confidently. Everyone in my position should know about this board! I've found it infinitely helpful from an emotional and educational standpoint in just a few days. Thanks all...

     
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