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    Feeling a bit consumed

    Hello hello!
    Curious thing to be here. I feel selfish. So many people are suffering so much more than I am with this condition. That said, I recently had my 2nd baby on 11/6/12. Healthy little man. Over the years, I always had these "jerks". Largely in my right hand, arm. Always chalked it up to dehydration or lack of sleep. Over time, with a little experimentation, I found these jerks had nothing to do with dehydration or lack of sleep, etc. I would also studder. A lot. Then, it would all just go away. Then come back. Well it came back. I almost dropped my newborn with a myoclonic jerk. It was time.

    Went to neuro. Things were looking up. Noticed I had a strong right handed tremor. Despite my denials, the neuro kept edging sleep issues into the convo. Folks, I sleep like a baby and am blessed to have babies that sleep the whole night through. I also have these moments that she said are partial seizures. So we did an EEG. Sure enough, they are seizures. I am put on topamax 1oo mg at night. MRI w/o contrast next. MRI comes back. Radiologist says its normal b/c no fluid, masses. What is not addressed are the hyper intense lesions on the t2 scan in the left hemisphere. Nothing in the right. They are relevant, in my opinion, b/c I am having right handed tremors with lesions in my left brain and everything is okey-dokey? Not a chance. I get numbness, weakness, electrical shocks, etc...

    F/u after the MRI. Neuro says well MRI is normal...I ask about lesions. She says maybe related to cholesterol. Never had high cholesterol in my life, still do not. And while all this is being said and done she says my seizures are idiopathic and ups my topamax to 150mg.

    No answers. Taking this med. still having some seizures plus topamax side effects. Any thoughts? Similar experiences?

    #2
    A lot of us get stuck in diagnostic limbo, it might help to get another opinion from neurologist that treats MS on a regular basis. This can all be very frustrating so try to hang in there and let us know you doing. Take care Dale
    Dale in NC, dx'ed 2000, now SPMS

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      #3
      Wish I had answers...just don't give up on getting answers when you are having active sx. Also, just a note, I experienced a flare up of sx, both new ones and a return of some old, after having my second child. I know I am not the only one...pregnancy & birth "can" be perceived by the body as physical trauma. For me, it acted as a trigger. Hang in there!
      Crystal

      Success is a journey, not a destination

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        #4
        Hello and Welcome Noorajoon,

        Don't ever feel selfish for asking for help! Nobody's concerns should ever be diminished or disregarded. I'm happy you've found this site.

        I've been here only a few weeks and I'm asking tons of questions, and getting tons of support. I help out where I can. Everybody counts!

        If you're not confident in your neurologist, you owe it to yourself to get a second opinion. Let us know how it goes!

        Take care!
        When I can laugh at my experiences, I own them and they don't own me!

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          #5
          Thank you all! What a warm welcome! Yes, diagnostic limbo for sure! I think you're right! The birth seemed to be a trigger for me. I have had some knee pains in the past but now I cannot even bend down to pick things up, getting out of a chair is almost impossible...scary. Seemingly unrelated though. But, I still have that weakness around the thighs, lower extremities. Really Weird. Sometimes I feel like someone is playing a trick and pinching me and running away, usually in my back. oh well, I have resigned myself to do only as much as I can and not getting crazy about it. No sense in that. I am going to see a Sufi Healer in my area to help me regain peace in my life. I try, but I can't do it alone anymore. You guys are great. I am so glad I did this.

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