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    New here, not diagnosed but currently seeking new Dr.

    Hi, my name is Heather. I am 24 and just came across this website. I will explain a little about why I am here. I have been really struggling for the past year with symptoms that don't seem to have a diagnosis.
    It really started getting bad when I was pregnant with my son who is now 7 months. This could all be pregnancy related and just a coinsidence that I am having some of the same symptoms now but I don't know. I was dizzy A LOT and having issues where I was just about fainting from it, they never figured out what it was and said it should be "fine" when I have him, however, nothing has changed.
    Along with the dizziness I am weak, tired, I have a tremor in my hands, I have been increasingly more forgetful (to the point I have had no idea what my phone number is anymore), I have been having horrible headaches that have required me to go to the ER for treatment, and today I noticed how weak my hands are. I keep dropping things and this kind of goes along with my legs getting numb and tingly a lot lately and wanting to give out from time to time while I walk.
    I went into the Dr about 5 months ago and she told me since my symptoms affect more than one system in my body that its "in my head". So I thought..hmm okay I guess and went home. A couple weeks later I was having severe arm pain in my left forearm and went to the ER because my fingers were tingly also and I was diagnosed with a blood clot.
    I went back to my Dr the next day because I needed further testing to find out why I would have one. The blood test for antiphosphilipid antibody syndrome came back positive but I need one more positive test next month to confirm I have it.
    When I got the information on this it said it was connected with Lupus. So I looked up Lupus, I had heard of it but never really knew much about it. I thought oh my gosh this is me. I really thought that I had found my answer so I went to a different Dr since mine didn't seem to be willing to listen to me and he had me do an ANA test which was negative so he ruled out Lupus. He then thought it was my thyroid since my TSH levels were low. I just saw the endocrinologist 3 wks ago and he was thinking I had Graves disease but my thyroid scan came back normal as well as my T3 and T4 tests. So that is ruled out now also.
    I started looking around online today for hand weakness and dropping things since I found this very odd and I found MS. I remember that this had very similar symptoms to Lupus and Thryoid issues but I never even thought about it. Looking into the symptoms it seems reasonable to get it checked out. I am kind of nervous and don't know what to expect when I see the Dr.

    #2
    welcome heather!
    so sorry you had to find us this way, but you're definitely in a great place for encouragement and answers.

    wow, a lot of what you said really hits home. pregnancy ('87) was probably my beg. that didn't end in dx until 2002.
    so be persistent and DONT LET THEM TELL YOU IT'S IN YOUR HEAD!!!
    if it is MS it actually is, but that's not what they mean!
    keep searching for answers and take care of yourself.
    i know it's scary, but i'm sure you'll get lots more excellent advice than mine from more experienced members. just hang in there and try to keep track of the good things going on in your life.
    like that wonderful child you have now!
    "All things are possible for those who believe." Jesus

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      #3
      Hi Heather:

      Last week, comedian/actor/writer/director Albert Brooks was on the Tonight Show. He was telling Jay Leno about using the Internet to try to find out more about some neck pain he had. I'm paraphrasing a bit here, but he said that, basically, no matter what symptoms a person puts into Google, the answer always comes back as either terminal cancer or MS.

      A lot of people post here saying they have "symptoms of MS." The problem is that there are no symptoms that are unique to MS. They're general neurological symptoms that can be caused by dozens of different conditions. That's why MS comes up so often as a possibility when someone does a search of general neurological symptoms. And that's why a diagnosis of MS requires both the presence of certain signs and symptoms that are characteristic of MS AND also the ruling out of (or accounting for) any other condition that can cause similar signs and symptoms.

      Conditions that can cause signs and symptoms that are similar to those of MS are the other autoimmune conditions, including lupus and antiphospholipid syndrome. Since you already have one test that's positive for antiphospholipid syndrome, it makes the most sense to concentrate on that because it's a specific finding. The antiphospholipid antibody isn't a characteristic of MS.

      Hand weakness, dropping things, forgetfulness and headaches are all generic symptoms. It's important to not get distracted by one condition just because it came up on an Internet search. If you want to look into more possible causes of your symptoms -- conditions that don't include the antiphospholipid antibody -- you'll have to pursue them with your doctors.

      Remember, MS is only one of the possibilities. If MS is one of the conditions you want to pursue, the following information will be helpful in talking with your doctors: http://www.nationalmssociety.org/abo...-ms/index.aspx. In the meantime, here's a link to info about antiphospholipid syndrome from a reliable source: http://www.mayoclinic.com/health/ant...ndrome/DS00921.

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        #4
        WELCOME , I AM SURE WE WILL HAVE A DX FOR YOU IN NO TIME

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          #5
          MS along with a few others is a diagnosis of exclusion. Other possibilities need to ruled out first. Just because a doctor doesn't hit on a test that's positive doesn't mean he doesn't know what he/she is doing.

          They will look for the most common/obvious first and progress from there. Sometimes all they can do is rule in/out one thing because that is their specialty.

          Occasionally you will run into an insightful, intelligent doctor that makes a reasonable educated guess that is outside their field, correctly or incorrectly, and he/she will make a referral to an appropriate specialist. All too often, the doctor doesn't feel qualified to venture an educated guess except that it might be psychological.

          Even some of those exceptional doctors that see other possibilities don't exclude the possibility of psychological distress and shouldn't exclude that possible diagnosis if they do not have the qualifications of a psychologist.

          That being said, it is very frustrating when there we know we have physical symptoms and are convinced of a physical diagnosis. If you are truly convinced then keep pursuing it and don't let a doctor dissing you or dissuade you.

          Whatever is going on, continue until you get the answers and the treatment you need.


          ** 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. **

          Comment


            #6
            WELCOME!!!!!! great to have you! did you get tested for lyme disease? just a thought (lyme). anyway, we will answer your questions that are bothering you, just ask away. we`re friendly in these parts! good luck
            hunterd/HuntOP/Dave
            volunteer
            MS World
            hunterd@msworld.org
            PPMS DX 2001

            "ADAPT AND OVERCOME" - MY COUSIN

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