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3 years of constant dizziness, no diagnosis

Posted , 4 users are following.

lindsayb1
lindsayb1

I need help on deciding next steps.  I first experienced dizziness in August of 2012, felt like a small earthquake or tremor, a sensation of constant motion, most noticable when I am still.   It has not gone away since, although it does seems to get better and worse.  Initially I went to an ENT, thinking it was vertigo.  The ENT told me I have nothing wrong with me and sent me to a tneurologist to get a MRI. The MRI revealed that I have a few small lesions on my brain.  The neorolgoist did a follow up on the next and back, as well as a spinal tap.   That doctor then diagnosed me with MS.   I went for a second opinion with a neurologist that specializes in MS about 6 months later. That doctor UN-diagnosed me with MS.  He has been monitoring me for the past 2.5 years (I have no other MS symptoms).  I have had subsequent MRI's, with no changes.   First treatment he tried was vestibular therapy, but then he pulled me from that and told me I was going to start treating me for mal disembarkment syndrome.  He did put me on Celexa , but it didn't seem to do anything so I stopped taking it.   Any thoughts here?  I do feel that "fog" feeling and I always seem to get headaches when my dizziness is the worst, as well as extremely fatiqued.

0 likes, 14 replies

14 Replies

  • linda68623
    linda68623 lindsayb1

    Posted

    I would recommend you find a real good ENT/Otolaryngotogist.

    Google Otolaryngotogist in your area.

    A plain ENT doesnt help. Search for one online. They specialize in this condition and others condition as well. 

    If anyone lives in St. Louis MO I can send you to an excellent doctor.

    • lindsayb1
      lindsayb1 linda68623

      Posted

      so you think I'm under the care of the wrong type of doctor?

    • linda68623
      linda68623 lindsayb1

      Posted

      I'm not a professional... their are good doctors and their are great doctors. Everyone is different.. I knew a great doctor and I went to him and he helped me. He listened to me and understood what I was dealing with. I still see him every 6 months for follow ups.

      I'm just surprised you had a spinal tap...I'm glad the test came back negative for MS..I'm sorry you had to indure that discomfort for no reason.

       

  • lisa08672
    lisa08672 lindsayb1

    Posted

    Hi lindsayb1, I'm sorry to hear your dizzy,I'm battling with severe dizziness ATM I'm off work 3rd week now with no improvement,I'm waiting for a MRI scan and have similar symptoms to you,I'm anaemic and vitamin d deficient,have tried migraine pills and havnt lifted the pressure,have you tried any or had a full blood test recently? Lisa
    • lisa08672
      lisa08672 lindsayb1

      Posted

      You can get more dizzy if your iron and vitamin d deficient also blood pressure low or raised can make symptoms worse.I get pressure in head when I'm dizzy and was told by ent migraines can make it happen too ,lisa
    • lindsayb1
      lindsayb1 lisa08672

      Posted

      yes that's a good call Lisa, thanks.  I need a reguar checkup done regardless.

    • lisa08672
      lisa08672 lindsayb1

      Posted

      Nothing seems to be helping me so far so just waiting for my MRI scan hope it reveals what's wrong,good luck and take care
    • lindsayb1
      lindsayb1 lisa08672

      Posted

      Good luck to you too.  I hope you get to the bottom of it and get effective treatment! smile

       

  • nanci28940
    nanci28940 lindsayb1

    Posted

    Hello Lindsay.  Just thought I would mention that lesions on the brain can be little "white spots" that show up in people who experience migraines.  MS is initially thought to be the cause, but is often ruled out.  Also the rest of your symptoms could point towards migraines, which can be accompanied with dizziness, nausea etc.  Never heard the term disembarkment syndrome before, but I assume it means that feeling of being in a fog?

    I was told by the neurologist that using CoQ10 is helpful for migraine patients.  I tried that, along with Krill oil for a while, but started developing bruises on my arms, and my blood pressure fell.  After reading up on those supplements, I found that both can cause that to happen.  I stopped using them, because my BP tends to run low as a rule.  I hope that any of this can help you.

     

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