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    Long time coming, newly diagnosed.

    Hi all, great place here. I feel funny posting, but I think I need the support of you nice folks.

    I was diagnosed RRMS on June 19th, after 15+ year of those strange sensory symptoms that no doctor wants to acknowledge. I had finally given it up as normal things that people felt, but maybe didn't talk about, so I was surprised when a month long bout of vertigo, with imbalance and a fall, prompted an ENT to do an MRI, and he sent me on to a neuro because of "few scattered"
    white spots in my brain.

    The neuro sent me for the lab work, evoked potentials, & cervical MRI. Everything came back fine except the visual evoked potential which showed a delay in both my eyes.

    The neuro, although I think he is very knowledgeable, is a bit condescending. I think he realizes it, and does seem to make an effort to clarify his intent when he addresses things. I am torn whether to move on or not, as it has been such a long road to finally get a diagnosis.

    So, I am considering meds. My course of symptoms has been
    long & I am worried whether I have progressed to SPMS. Any guidance on this?

    Here is a list of symptoms over the years:

    1992 -Vertigo,
    Neuralgia right ear
    No tx.

    1996 - Bell's Palsy,
    Trigeminal Neuralgia, both left side
    Neg. MRI - tx'd with steroids & Neurontin

    2002 - Neuralgia, back of head
    Bilat. paresthesias, legs
    Burning, bilat. feet
    Gloved feeling hands & feet
    Weakness, right leg
    Neg. MRI
    Neg. nerve conduction
    Tx'd with steroids & Neurontin

    2005 - Severe neuralgia, right shoulder
    Episode of left eye pain worse with eye movements
    Neuralgia tx's with Neurontin

    2012 - Veritgo x's 4 days
    Tx. with Meclizine - no improvement, resolved itself

    2013 - Vertigo
    Imbalance
    Sensitive to light patterns
    Fall

    1996 - Present - Neuralgias, various places

    So, that's me in a nutshell, albeit a big nut! Thank you for reading & if you have advice concerning meds, I will be grateful.

    Thanks again,
    Dana

    #2
    Welcome!

    Hi Dana, welcome to the MSWorld forum! Sorry that it was necessary for you to find your way here, but I trust that you will find support, encouragement and good advice. That's been my experience.

    Sorry I don't have any advice to give you; I'm going to leave the advice to the more experienced members. I'm too new to this whole MS business, and I'm just learning how to deal with the changes in my life. I just wanted to give you a warm welcome!
    "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

    RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
    Currently following Dr. Jelinek's OMS (Overcoming MS) plan

    Comment


      #3
      Hi Dana: Welcome to MS world! Sorry for your recent diagnosis but at least you have an answer for what has been ailing you off and on for so long. Looking at your well written medical history, it sounds like you have RRMS as you have times of flares and times they go away. SPMS really doesn't have many flares, they just kind of get worse steadily with disability (walking, weakness etc).

      If you do not like your doc, or can't really communicate with him, then change for a new one. You are already diagnosed at this point. You may want to start meds first. Go to the National MS Society and read about all of the medications used for MS, and that will give you an idea of what is out there. Then, come back here and look at our medication section and see how people reacted to each (the good, bad, and the ugly). Then make your choice as it is yours alone to make. Your neurologist can make suggestions, but so can you.

      Best of luck and let us know what you decide!

      Lisa
      Moderation Team
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment


        #4
        Finally diagnosed

        Hi Dana,
        This seems to be a common story I have been hearing. I was diagnosed in 2012 after having many strange symptoms like yourself. About 15 years ago my left great toe went totally numb. You could stick it with a pin and I could not feel it. Had an x-ray taken to look for any breakage. None was found. A podiatrist thought I may have pinched a nerve in my foot.

        After several months, feeling returned but left me with a small sensation in the toe. Not a big problem. Shortly after that I had slight tingling in my left arm. Doctor thought it was related to my job in the dental profession and recommended physical therapy. Once again this resolved itself.

        It wasn't until 2009 that I experienced bilateral tingling from soles of feet up to thigh area upon walking only. Ran around once again from doctor to doctor and ended up in physical therapy. Had MRI and lumbar puncture with no real definitive results.

        There was a suspicious lesion in the Thoracic region but not enough to diagnose. I was sure I had MS but the neuro said "no way".... "MS doesn't present itself like this". At this point I was 58 and neuro felt I was too old to be getting MS. She decided to follow me every 6 months.
        Once again these symptom cleared mostly. I was still working out 4 days a week with slight sensory awareness in both legs.

        Finally in 2012 I had an MRI and was diagnosed with mild MS. So far tried Copaxone for 5 months and had to stop because of elevated liver enzymes and horrible welts. Waited 4 months and started gilenya for 3 months and had a strange reaction of skin lesions and had to stop that medication. So I have been essentially untreated. May try Tecfidera in the fall. Not a easy road to travel.

        ** 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


          #5
          Thank you all for your welcoming spirit. I value each one's insight and understanding so much.

          I return for my follow-up tomorrow & I have yet to make the big decision of DMD...

          Hope all is well for all of you.

          Dana

          Comment

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