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    How long did it take you to be diagnosed?

    I know I am going to most likely be the exception but here is my story.


    In 1986 I started getting numbness in my arms and legs. I was in the military at the time and basically they just medicate and send you back out.

    I got out 1991 after desert storm. I had lots of issues the exams showed concern and into an MRI machine I went. They found lesions on the MRI and off for a week stay in the hospital. Blood work spinal tap tests tests tests..

    Diagnosis "a demyeliteating disease of the CNS" suspected MS.

    The did 6 month MRI's looking for any changes till I moved to a huge city in another state. The VA there said the brain scan looked perfectly normal and the MRI's stopped.

    As the years passed I battled to stay employed as my mind and body continued to slowly break down. In July 2013 I had an episode that rendered half of my body completely numb.

    My Dr said I just needed a massage. After emitting several foul strings of words, she send me in for an X-ray. Then an MRI. Another spinal tap and finally a diagnosis of MS.

    By then I have lived with it for so many years it did not phase me one bit. I knew it back in 91. I was slow am in pain all the time. I force myself to keep working keep moving, I am afraid if I stop driving my self it will just get that much worse.

    I just started Copaxone 14days ago. Here is to hoping it helps!


    So how long did it you?

    #2
    I realize daily how fortunate I was to be diagnosed as quickly as I was. 1st symptom was October, 2008, 1st appointment with the neurologist was May, 2009, 4 MRI's later final diagnosis was early June, 2009, and I started Tysabri the end of July. My progression has continued, but I'm convinced I would be worse off.

    Comment


      #3
      I avoided "official" diagnosis back in the mid 1970's for as long as possible, since all it would do would be to make me uninsurable and get me kicked out of grad school. However, my own ophthalmologist told me I probably had MS after my second episode of optic neuritis a few months after the neuro-ophthalmologist specialist diagnosed ON the first time.

      I did not get an MRI, official diagnosis, or any treatment until 2002.

      So figure it took a few months (two episodes of ON) or 27 years.

      Comment


        #4
        I was in limbo for only 4 days after a stroke like attack left me hospitalized for 5 days. MRI showed 11 classic MS lesions in different locations and 3 were active. I met the McDonald criteria and started rebif 3 weeks later.

        Who knows how long I've actually had it. Looking back there are no recognizable relapses but it could help explain my bladder issues, my bouts of fatigue, and my sensitivity to heat.

        Comment


          #5
          In the 80's I was dx with a form of epilepsy after 5yrs of sx.
          +10yrs later, my sx's returned, I was dx'd depressed, stressed, somatazetion? disorder, etc. Dx with MS approx. 4yrs later. Theory is the epilepsy was presenting MS sx's, which occures in approx 2%-5% of MS. At least as far as I know, the epilepsy is no longer 'active".

          Good luck with Copaxone and don't give up, push every day to keep working for as long as you can. Get your STD, LTD, and retirement plans in order. Best of luck.

          Comment


            #6
            Approximately 5 years, but after connecting all the dots I have had SX since 1987.

            I also was sent to different docs and specialist.

            I have been DX with all sorts of different diseases until the final boom.

            4 mri's, 2 lp and 4 nueros

            Not happy about it but at least everything makes sense.
            DIAGNOSED=2012
            ISSUES LONG BEFORE
            REBIF 1 YEAR

            Comment


              #7
              Hello JamesO and welcome to MSWorld.

              I went to my PCP who said he could not help me and handed me a referral to a Neurologist. Then Neurologist to testing to a definite diagnosis of MS.

              All of the above took 3 months in 1985 at the age of 24.

              Symptoms started in childhood but I was never taken to a Doctor for my complaints. I grew up thinking everyone felt or experienced what I did.
              Diagnosed 1984
              “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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                #8
                I was on Active Duty at the time of my diagnosis. Took 2-3 months of testing and then diagnosis. I was retained in the Military.

                I sure hope you kept copies of your medical records and are hooking up with a Veterans Service Officer (VSO) at your local VA. You are entitled to some benefits. If you have not done so, go to a VSO and tell them the story you just spelled out here and get the ball rolling.
                Katie
                "Yep, I have MS, and it does have Me!"
                "My MS is a Journey for One."
                Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                Comment


                  #9
                  A week. ON, four days later a MRI, and hello MS. I'd had numb feet and fingers and fatigue about a year earlier, and I thought it might possibly/ probably be MS, but I didn't pursue it. Had to pursue the double vision, alas.

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                    #10
                    I was in limbo for over seven years, but that's because what showed up on the MRI they thought was from my diabetes, not MS. And before the seven years of limbo, I was hardheaded and did not see a doctor about my issues for three or four years.
                    hunterd/HuntOP/Dave
                    volunteer
                    MS World
                    hunterd@msworld.org
                    PPMS DX 2001

                    "ADAPT AND OVERCOME" - MY COUSIN

                    Comment


                      #11
                      Diagnosed

                      In 1964 I started having some what I thought was serious problems. Went to two doctors and was told by two doctors there was nothing wrong. My eyes wouldn't move so I went to an eye doctor. He recommended I see a neuro surgeon. I did in downtown Chicago. I was told I had a brain tumor or brain infection and to go to the hospital immediately. I never was told what was wrong but that it was serious. I was put on ACTH treatments which was 24 hour a day IV treatments for 7 days.

                      Three years later I moved. I was a special education teacher. I started having a serious problems. The school nurse there recommended I see a certain Neurologist. I did and he was the one who told me I had multiple sclerosis.

                      Comment


                        #12
                        My gp sent me to an ear,nose and throat dr. who ordered the mri that revealed lesions. He sent me to a neuro who, after a boat load of tests, dx me with ms. All this within 3 months.
                        That was 5 years ago.

                        Looking back, I had ms for 30+ years.

                        Comment


                          #13
                          I was inordinately lucky. I saw my PCP on a Thursday, got a cancellation appointment with a neuro on Monday, and was told then that it was MS, spinal stenosis, or a tumor on my spine. (wheeee!)

                          MRI the following day, Tuesday, showed a massive lesion on my c-spine. Brain MRI on that Thursday showed lesions in my brain. So, I was diagnosed that Thursday, pending bloodwork, one week to the day of when I first when to see a doctor.

                          To be fair, almost 4 years prior I was diagnosed with central serious retinopathy which, per the retinal specialist and neuro-ophth was almost certainly ON with pars planitis. But, no one figured this out until more than a year after my MS diagnosis.

                          Comment


                            #14
                            Long time

                            I was undiagnosed for about 4 years. I had back fusion surgery and initially, it was easy for me to disregard the numbness and balance issues on nerve damage. But when the new symptoms advanced and got worse, I went to see an ortho Dr., who asked me if my right knee was bothering me (NO) and he sent me for physical therapy and a nerve conduction study. It was actually the PT who put it together in observing the strange combination of symptoms. She handed me a note to give to the neuro at the nerve study appointment. He immediately recommended an MRI. And early diagnosis is very important. My primary care Dr. should have been more pro-active and not dismissed symptoms

                            Comment


                              #15
                              Thanks for your service.

                              I was 13 years, bit had one episode in 1993 of confusion followed by severe vertigo and cog fog. Tested for stroke, epilepsy, etc....MRI was normal. After that, cog fog remained but I only had minor numbness and joint pain. So in 2006, was blind-sided by diagnosis when L'Hermites started, then followed by vertigo.

                              While it took a long time looking back, to me it was quick. Two months in 2006, and 4 months if include 2nd opinion.
                              Kathy
                              DX 01/06, currently on Tysabri

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