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    Weird symptoms, neuro doesn't know.

    Hello,
    My name is Aleksandra, 28 years old living in Germany, but I come from Poland, uptill now I have been working as a dentist. I just want to tell my story, maybe someone can relate.

    It all started in June, I was driving, totally relaxed, comming back from shopping, when all of the sudden I felt this unusual head sensation, it's hard to say if it was electrical shock. It was so disturbing and new to me that I got a little scared and 2 hours later I went to the ER- they gave me a painkiller and sent me home...The next 2 week I have been doing fine, I just forgot about it. Then one day it started all again- after my workout- this time I felt metallic taste in my mouth, I felt like my eyes were swollen and those head sensations.

    This time I went to see a neurologist, she diagnosed me with panick attack and gave me ativan. The next 2 months I had lots of other neurological symptoms, which are comming and going- started with tingling in hands and feet (3 days), extreme head pain behind my right eye, eyeball pain (2 days), blurry vision also right eye, shooting pains in arms, thighs, right kidney, bladder, chest- right side, I would say lung pain, amoung this I had those head sensations, like attacks with a slight weakness of my left hand, feeling like my face and throat are swollen on the right side, feeling like my head and hands are burning and nausea (3 days long).

    Sometimes I felt like I'm about to die- right now I experiance burning tongue sensation, with tooth marks on it. Today I was talking to a friend- I was excited, because I haven't seen here a long time, and all of the sudden my hands were shaking and I got extreme vertigo.

    Back to diagnosis- I was at the hospital of course- I had mri, which showed 10 mostly subcortial located lesions, 2-3 of them fulfilling Barkhof criteria, neck clear, LP clear, VEP SEP, also ok. The naurologist which is MS specialist, wrote in the letter, that due to MRI photos he cannot explain my symptoms. I don't understand how is it that my lesions are located in the area that is not responsible for any functions and yet I have so many symptoms, mostly in the area of head and neck, seldom I had tingling and numb feelings in my hands at night.

    My neuro says that I might have MS due to my lesions, I will have another MRI on 13th October. Oh- lume, vasculitis, lupus, small vessel diesase- I don't have it. I'm trying not to freak out, but it's so hard feeling most of the time malaise, and having non stop burning tongue 2 weeks now. Greetings to all limbolanders


    ** 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
    The tongue thing I can definitely relate to, the head buzzing too. I am glad you are seeing an MS specialist so they can sort out what the problem is.

    Subcortical lesions are common in MS, but they look a certain way (ovoid shape). You certainly have enough alone to meet the McDonald criteria if they resembled MS lesions or demyelination. It is hard to tell from your MRI.

    5-10% of us do not have positive O-bands, especially in the early stages of the disease. Some never get them.

    Write down everything you experienced, times, how long they lasted, how long between symptoms etc for the new neurologist. It will be important in your diagnosis or road to differential.

    Good luck and I hope it turns out that you don't have MS.
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

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      #3
      aleksandra,
      I agree with 22cyclist. I would also add that your neurologist isn't the only specialist in the world. I would plan on getting a second opinion from another neurologist, Preferably a neurologist from a university hospital. Possibly Heidelberg University hospital could help you. Good luck

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        #4
        Just to clear up- my current neuro is not my first one. His opinion is the third actually One neuro said that he doesn't see 10 lesions, only 2 and he diagnosed me with migrenes... And the second one, who was supposed to be MS specialist said that I could be born with those lesions, and it's all in my head, also that I cannot accept that those head sensations were panick attacks. My current neuro is the only one that took me seriously and thought that I might have MS in the future, that's why we are repeating MRI in October, to check if I have new lesions after those 3 months. MS or no MS I would really like to know what is going on with my head. Thank you for your responses

        Comment


          #5
          anxiety / ms ?

          Dziendobre, yakshay mash?

          (Sorry about spelling I am not fluent in Polish)

          It could be anxiety, MS, both or something else.

          I am in limbo land too and maybe have MS, seems very likely at this point. But definitely long history of anxiety which panic attack is an event very much related to it in myself and others. On the other hand anxiety could be also symptom of MS or something else.

          Maybe sometimes anxiety is just anxiety and maybe sometimes it's not. But in my experience of anxiety some of those symptoms are probably in addition to it. And usually it doesn't cause lesions, not that I know of anyway.

          In addition to the other tips you've got on here try and work on relaxation techniques anyway. I know it might sound silly because panic is difficult to control when in the thick of it but breathing technique does help, try and do it when you're well too. I was skeptical and even get dizzy but it does help. I would meditate but I live under a flight path on a busy road we get two minutes of quiet at 3am hopefully you're somewhere quieter, if so, give it a go, the buddhists are experts, google is useful.

          Also try not to get embarrassed by it if that's a factor. I became mildly agrophobic because of that. It's not your fault and the feeling does pass. Try not to be hard on yourself and good luck with everything xxxx
          ---------
          Wishing everyone luck and as many good days as possible.

          Comment


            #6
            Welcome to MSWorld, aleksandra!! Wie gehts?

            It's nice to meet you. I'm sorry you are in limboland right now, but hopefully you can get some concrete answers with your next MRI. Most of us know what you are going through. The diagnose process is often times a long and winding road through a tunnel - and sometimes lasting years! Hope you can find that light at the end and soon! It's good that they have ruled out other disorders. That helps in the process.

            Keep us up to date on how it's going and stay strong!
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

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