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Your MS Diagnosis Timeline - Member Topic for October 2017

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    Your MS Diagnosis Timeline - Member Topic for October 2017

    Your Member Topic for the Month of October is here!
    You made suggestions and we listened!
    Thanks to all who participated in September's Member Topic of the Month!

    Whether you have been diagnosed or are still in Limbo, the time it takes to be diagnosed is very different for everyone. If diagnosed, how long was your timeline from first symptom to diagnosis? If you are still in Limbo, how long has it been from your first symptom to where you are today?

    Please join us in this important conversation on your MS diagnosis timeline by sharing your story.
    Your thoughts, suggestions and concerns on this topic are always welcomed!

    Thank you all for your participation and stay tuned for more of your suggestions in the months to come! We appreciate all of your thoughtful ideas and hope to hear more from you! You can add more suggestions by clicking here:

    Creative Center Director
    Content Management Director
    Social Media Administrator

    My story

    Almost 2 years to MS diagnosis. Was questioned and confirmed later.

    January 2002 -- My MS journey began with a bang.
    I woke up in the middle of the night unable to move my left side. I'd had previous symptoms for two days before -- I'd thought it was some weird flu.

    I was initially diagnosed with "probable stroke", although MS or other demyelinating disease mentioned as a possibility.

    April 2002 -- New symptoms. Fainting multiple times in one afternoon. Hospitalized with psychotic symptoms. Stroke dx wasn't correct. Many tests; many things ruled out. MS still considered a possibility. Nothing figured out.
    Followed by two months of severe short term memory loss (I remember only two brief 30-second events during that time). And, extreme fatigue. I slept 16-20 hours per day.

    July 2002 -- Two week visit to Mayo Clinic to try to diagnose me. MS still not ruled out, but diagnosed with "probable central nervous system lupus".

    October 2003 -- By this time, I had multiple flares, 7 MRI's and so, so many other tests. Was diagnosed with MS because I met McDonald's criteria and because MRI "looked more like MS".
    Began Betaseron.

    July 2008 -- Switched from a neurologist in Wichita to an MS Specialist at KU Med Center in Kansas City. She wondered why my neuro had changed dx from lupus to MS because she thought it looked more like lupus. She looked closely at all of my previous MRI's and tests and did another MRI. She confirmed it was MS.
    Switched to Copaxone because Betaseron had not been managing my MS effectively. I'd been having 1 or 2 serious flares per year that required z 1 or 2 or 3 week hospitalization each time.
    In May of 2008, I applied for SSDI; was approved within 3 months and began receiving SSDI payments in October.

    2013 -- I had another follow-up MRI with her since then. She confirmed it was definitely MS, although neither of us were wondering anymore.

    Now, I haven't been hospitalized since 2010. Flares are much more infrequent and more more minor. No flares since 2014.
    Last edited by Mamabug; 10-03-2017, 10:22 AM.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.


      My journey started in 1998, 6 weeks before my wedding. I was 25 at the time.

      Came home from work on Friday and went out to dinner with some friends to "take a break" from all the wedding stuff. I began having some numbness and tingling in both hands. Being I am and OR nurse I wasn't to concerned, just figured I was getting carpal tunnel.

      By Saturday the numbness was progressing up both my arms and was getting much worse. I was now becoming very concerned. At that time my insurance would not allow and ER visit without Dr. referral. So I called the Dr. on call and he would not approve an ER visit. Said I was young and had no chest pain or shortness of breath. Told me to call my family Dr. on Monday. I wasn't happy and feared that I may have Guillian Barre syndrome and would stop breathing during the night.

      By Sunday the numbness was a band across my chest, I couldn't feel anything. And by.Monday it was beginning in my feet.

      Went to to work on Monday obviously very concerned seeking the support of my co-workers, who by the way were amazing💕

      Called my family Dr. 1st thing when they got in, only to be told he was on vacation and I would have to wait until he was back. I worked for my family Dr. while going to school so they knew me well at the office. I told them this was emergent and I had to see someone ASAP. They called another Dr. who agreed to see me immediately. When he evaluated me his answer was "I can't help you, you will need to see a neurologist....". I was so mad because I knew that and didn't need to waste my time.

      The covering Dr. called a neurologist at the hospital that I work for and he agreed to see me that day. He didn't have office hours but agreed to open just for me.

      After evaluating me he told my now husband any myself that he was 99% sure I had MS. But we had to rule everything else out 1st. I immediately had all the routine diagnostics for that time. Spinal tap, MRI, evoked potentials and tons of blood work. My MRI and spinal tap were both positive and I was given a "probable MS diagnosis". I was told I would probably be in a wheel chair in 10 years. My neurologist said he could not give me a definitive dx until I had another relapse or a change in MRI. And he could not start any long term treatment without a definite diagnosis. Even though he knew I definitely had it. So we did a round of IV steroids. By this time I was having difficulty walking.

      Fastforwad about 9 months, I was fully recovered from that relapse and have not relapsed since.

      Repeat MRI a year from "probable dx" showed some changes and I was finially diagnosed relapsing remitting and began long term treatment with Copaxone

      It it has been 19 years and I have not had any relapses and I have not had any changes to my MRI! And I still work full time in the OR. I do and always will have pseudo exacerbations if I become over heated or "over do it". But for the most part I know my limits. I have what I feel are some cognitive issues but the neuropsychologist feels that they are just normal signs of aging. The only thing the neuropsychologist noted was that I can not draw a simple picture and that is related to my MS lesions. I am not an artist so I am OK with that.

      Due to injection site site reactions and I had to stop Copaxone after 9 years. I then went on Rebif and when Plegridy became available I switched to that and have been on it since.

      My my husband continues to support me and has been by my side since day 1. I honestly do not think I would have made it this far without him.

      I look forward to reading other people's journey.


        My journey was thankfully very short.
        Early January 2016, shortly after I turned 21, I began experiencing some pain in my right eye when I looked in a certain direction (to the left). This was the longest part for me - at first no one could figure out what was going on, but my vision in my right eye deteriorated. Eventually I was diagnosed with optic neuritis and was sent by my ophthalmologist for an MRI, as well as referred to my current MS specialist.
        Two weeks after my optic neuritis started, the right side of my face also became very numb. This was my second symptom in a matter of weeks!
        Finally, shortly after that, I became aware of tingling in my feet that would travel up my legs when I walked either too much or too fast. I still get this occasionally.
        I had my MRI in February. I met my MS specialist on March 17th, 2016.
        I was diagnosed right away because of the presentation of several very different symptoms. It was odd, because I actually was diagnosed before they did the big blood draw testing for all sorts of other things, but all of those things did end up coming back negative. So it was official.
        I am now in a clinical trial for a drug called Ponesimod - I have been in this trial since May of 2016. I decided even if it did not end up helping me, it might help someone. I did have a couple of strange relapses this past summer - one very minor and one that did not feel so minor to me (my right foot was very numb), but overall I've been very fortunate in that it seems I tolerate and respond to whichever drug (Ponesimod or Aubagio - it is a double blind so no one knows which) I am on!
        "Don't lose hope - when the sun goes down, the stars come out". - Unknown


          The timeline to MS diagnosis was relatively quick for me.

          For about a year before going to my doctor, I experienced symptoms which came on when I was fatigued, or when I got too warm. But then they would go away after resting or cooling down, so I brushed them off.

          These symptoms, when fatigued or too warm, were: a slight limp after walking awhile, right arm/hand weakness after using it awhile, bladder urgency, blurry vision when warm or during exercise, tripping/incoordination while walking. I had no pain, which probably factored in to my not going to the doctor right away. And the symptoms always subsided.

          When these symptoms began to appear more frequently, and I began to have trouble lifting my leg into the car, I then went to the doctor. He examined me and referred me to the neurologist.

          After a clinical exam, MRI's of brain and cervical spine, lumbar puncture, and neuro-ophthalmologist exam, I was diagnosed with MS. My neuro referred me to the Mellen Center for MS (Cleveland Clinic) to confirm that the MS course type was Primary Progressive.

          I was spared the frustration and anxiety of being in Limbo, as so many others have had to endure.

          Take Care
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~


            I was diagnosed a very long time ago, in 1984 or 1985 (age 23 or 24), I'm not even sure anymore ( I ran across some papers recently that would indicate 1984 as my diagnosis year)

            Spring (April I think, maybe late February); I was out mowing the lawn and had gotten half the backyard done when my legs didn't want to support me, I got very tired and I my hands started to shake. I shut off the lawn mower and left it were it was. I went into the house with much difficulty and sat down. I slept most of the day and all night.

            The next morning I felt fine. Went back outside to finish mowing. I experienced the same thing but much quicker and it seemed worse than the day before. Needless to say I never finished mowing, my husband took care of it when he got back into town.

            I never did recover from the second attempt at mowing. My ability to walk became worse (bilateral leg weakness and difficulty picking my feet up), hand tremors (both hands), sleeping a lot, I developed weird sensations from the waist down every time I looked down. My husband told me to stop looking down . I became numb from the waist down (including the girlie parts), tingling/vibrations, pins and needles in both legs.

            Saw my Primary Care Physician. After doing an exam he said he could not help me and handed me a referral to a Neurologist. PCP - Neurologist - testing/evaluation - diagnosis - 3 months. Symptoms of MS have been taken back to childhood.
            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


              My Timeline

              Around 2004 or so started feeling tingling in hands. Tingling went away. Doctor thought carpal tunnel and I wore wrist splints. 2008 after having daughter decided to start running but noticed started tripping over my own feet and slight limp. Went to doctor. After reading my file he asked if anyone mentioned MS before with the hand tingling, NO. He referred me to Neurologist and after he had MRI's done and spinal and in May 2009 was diagnosed with MS.


                Diagnosis Process: 2 months; Onset of symptoms to Dx: 20+ years

                I was diagnosed in January of 2014. In 2013 I visited a Dr for weird pinching headaches, loss of vision in one eye twice, using wrong words, memory issues, and numbness to half of my face. The PCP ordered an MRI of my brain that showed 4 lesions (suspicious for MS) he sent me to a neurologist. The neurologist told me I was middle aged, overweight and more than likely depressed and none of this was MS that he "highly doubted" it and would do a neuropsych eval on me to prove it was depression (btw I have no history of depression and had just finished a 6 month contract in the Virgin Islands, I thought I was happy?). But he did the spinal tap because "you insist". Two weeks later he calls me at home with results and says I have MS.

                I switched to an MS specialist who said that I had had it 20+ years based on my symptoms. At 28 after the birth of my first child I began having weakness in my lower extremities (having to sit down to put on underwear etc) lasted about 6 months got better off and on. About every two years after that I would experience about a 3-6 month span of time where I felt very tired, overwhelmed by everything and had weird symptoms that would stay steady through the months and then continue to come and go with the previous symptoms, things like dizziness to the point of not standing up, frequent falls, limping, incontinence, forgetfulness, upper arm weakness, had a head tremor for 3 yrs now only when I'm relapsing or tired. etc etc etc. Each time I went to the Dr I was told its benign essential tremors or you need to l lose weight or here's your prozac. But nope it was MS.

                I tried to continue working after my diagnosis as an RN for another 6 months but was put on leave by my hospital "until my Dr cleared me" think that was also during a relapse was having severely slurred speech and couldn't walk in a straight line. That clearance never came and I was approved first time around for SSDI in 2014.

                I try to do as much teaching as I can with new PA's and NP's and even the residents that saw me at my last hospitalization about the weird symptoms of MS and not jumping to conclusions about women's mental health. I don't know for sure that early diagnosis would have changed the outcome of my disease but it might have helped. Who knows. But I don't want someone else to be treated as I was simply because MS is such a strange and different disease for all of us.


                  Long & winding road...

                  I was diagnosed in '86 (age 26), but I had had "symptoms" previously, numb skin on belly, unexplained weakness. I have the unfortunate luck to have had an aunt with MS.
                  I was walking with my daughter and her friend, enjoying a lovely summer day; when after about a mile, my ankle went out. Nearly nonfunctioning noodle. After we stopped laughing, I was able to slowly stumble home (yes, much like a drunk), the last quarter mile or so.
                  I went to a family doctor, who after hearing I had an aunt with MS, gave me a requisition to see a neurologist.
                  Have you ever heard, "yes, we've seen MS run in families; but it's not genetic."?
                  An MRI was all he needed; and I was prescribed Copaxone - which I never had filled.
                  Meanwhile, my husband of 18 years decided he didn't want to deal with MS; (i guess that was all he needed!)so in 1999, divorced, I moved to a college town and did some substitute teacher-aide type work where I needed to be able to walk children from one class to the next. I started to get sickly and weak, then the first signs of MS recurred. I was then put on Betaseron. Did that off and on for ~9 years, tried Rebif and Tysabri, kept praying for an oral solution, then Gilenya.
                  I married an old friend in 2011; he's my willing partner & partisan, I behave better because of him.
                  This is important to understand with MS! Things aren't bad - except menopause, I have had to catheterize 2X daily for the last three years, I'm woefully tired & unmotivated ... I will be 57 in a few weeks. I have two children, boy & girl, four grandsons, a brother who also has MS, my Mom is 90 and still getting around. Lots of ups and downs in life. 31 years with MS and I still say G-D is good. Peace.


                    About 3 months from first symptom onset to dx. Beginning of June (of this year) I began experiencing skin numbness and losing feeling in my fingers. Thought, oh this is weird. I had just come off a trial at work and wasn't stressed so thought it was weird. Made an appointment with my PCP. She though hrm, this is odd. Lets do blood work and send you to neurologist. Blood work came back fine except to increase Vit d. Ok, done.

                    Was a month until Neuro appointment and in that time developed L'hermittes. Go to neuro and she was like, oh I know exactly what this is (the L'hermittes) and it is caused by inflammation in your spinal cord, could be caused by a lot of things but yes, MS is one. Lets get pictures of your C spine. Went for that about a week later and it came back showing a lesion. She said yeah, that's no good, lets look at your brain. Had that done same day (she wanted to see me back the following morning so stat brain MRI it was). That showed lesions, so she sent me for the LP. Had that done the same week and the results trickled in over the following month. Saw a new neuro at MS center the end of August and he was like yeah, MS, well, CIS high chance of developing full blown MS. No evidence I had ever had a flare before. Started on Gilenya by early October.

                    So, symptom onset June 2, DX on Aug 31, DMT October 5.


                      Short rd leading to a longer rd

                      I was dx in Oct. 2010. I had actually taken a metal health leave of absence from my job. Was numb from breasts cut the breast in half down. Weirdest feeling ever is that! So I called my best friend who was finishing up her clinical for NP and she put me on hold for 1 second. She was talking to her supervisor I guess. BF told me to go to doc asap or she would drive into town and take me herself. Went to doc who actually said u need a Neuro asap and if u can't be seen by tomorrow I'll admit u and run the tests myself. So...i got into the WORST Neuro in town and had a probable dx within 48hrs. He did MRI scan twice of everything, was told because I had so many lesions. Fast forward a month...

                      NEW Neuro that I saw late Nov was surprised I wasn't in Hospitalor at the very least IV Steruofs
                      DX 10/10, JCV postitive by a lot (said Nuero lol), Betaerson, Gilenya, Tecifidera, Aubagio now on Ocerevus


                        Haunting of MS prior to Dx after years of S/Sx

                        My story started with my father, he found his MS in the 70s and through deterioration Pneumonia got him ten years later. My symptoms looking back started in high school, of course enough wasn't known about those kind of symptoms, so I just passed it off as growing pains literally. College same thing, had no idea what an MS hug was but they sure hurt and it was always around finals. Lack of sleep and stress in heaps. We didn't catch on later because my husband suffered from increasing back pain then knee trouble, so when we quit enjoying as many hobbies, well you can guess.

                        It usually centers on my legs, pain in high school trying to run cross country and Spring fighting with stair cases, then in my early 30s as an EMT the heated patches or feeling of vibration without cause led me to a discussion with my doctor. She trusted me and we started looking that was in 2006. Now I love the fact that I went to get Lasik in July of 2007 it was the longest 50 seconds twice that I have had to deal with so far. Very sensitive to lighting. However, two weeks later lost clarity in my visual field which led to the Dx of optic neuritis.

                        Now back then it wasn't a benchmark for Dx of MS. My lesions didn't make a remarkable appearance till Nov of 2011. So you can safely laugh that I am one of those brains that just don't like to conform to norms. My safest guess is that most of my damage is grey matter, and that I am luck enough to replace my white matter fast enough to slow me down too much. However, it has been a slippery slope since 2011, I had to take myself out of the front-lines of the medical world in September of 2016. I just couldn't feel certain that I could be safe enough to come home after shift for myself, my crew or my community. Ten years of EMS full-time has beat me up more thoroughly then most. Lets just say it was a lot easier pushing myself to be active when there were critical responsibilities.

                        Now it is trying to find the balance between needing to rest and getting moving. The intellectual aspect has been the worst and the first to go, I was bilingual once, I can get the gist now only and it slips away quickly because I can't use it because I can't access it and all the other information I have absorbed over my short lifetime. I loved being a teacher and sharing knowledge. Now I can barely remember all that I have learned about MS, the brain, the body and how it is affected by the environment in which I live. I am stoked that I could write this up, because lately working on any type of lighted screen hurts. Stay sane, its the last line of defense. Cheers


                          My MS Diagnosis

                          It would be nice if maybe a Dr, a neurologist could read over this thread. Woman know their bodies and go to Drs when something is not right. Since MS affects more women than men, Drs should recognize these MS signs. I was complaining since 2014 of tingling pins and needles in feet that never subsided. When I tilted my chin forward and down I got that electrical woosh go down the back of my neck.

                          I was having trouble walking and looked like I was drunk by mid day. I tripped every day at work and would make a joke before others would comment. My cognition was getting so foggy I was having trouble multitasking. Going into the ocean became too painful, like knives stabbing my ankles & legs. Then I started forgetting appointments and people’s names. This made me feel others would think I was unreliable. I went to my GP, a back Dr and 3 neurologist for 2 years. They all ordered MRIs of my head, neck and spine. Each one said the MRIs “were unremarkable”. Then why do I walk like this. I knew they were missing something!

                          Finally while on vacation my husband, whom I have love madly for 30+ years videod me from behind (no hubby should ever do this to his wife) w/o my knowledge and when we returned and saw the next Dr, he said “Oh boy that’s not good.” He finally got me to the right neurologist who was the lesion on my brain and another on my spine. When my husband and I sat across that Dr and he informed us that his findings were consistent with MS and he is sending me to an MS specialist, I replied THANK YOU. My husband asked me if I heard the Dr correctly. I was so relieved that someone found something, I wasn’t going mad and now I could get the rt help. My MS Dr is fantastic and just happens to be a woman, she told us the lesions were there on all the prior MRIs I had for 2 years.