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Finally! I believe it's MS! LONG

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    Finally! I believe it's MS! LONG

    I've been in limbo -- with probable MS for over 14 years. In 2014, I moved to Louisiana and just gave up. I quit trying to determine what caused all of my symptoms. I was diagnosed with fibromyalgia instead. Once I moved here I got a rheumy and he gave me meds for fibro. They never worked.

    One day, I had a flare and a sinus infection. I went to the doctor and he gave me a steroid shot. It was the first time I ever willingly took one in years. I literally walked outside and was way better. Not in the hyper way normal people are, just in the way I was before all this started. As another test, I started taking anti inflammatories during flares. They worked. By this point, I had returned to work and not able to really challenge my diagnosis.

    About two years ago, I got a bad eye flare. I went to the eye doctor. He found a lesion in my eye in the nerve. I was sent to a specialist. It never occured to me that it was MS. The specialist looked at my eyes, and asked me about my docs. I told him I had a rheumy and a neurologist. ( I have cognition problems) He told me it's an autoimmune disease-- and to go see my docs-- both of them.

    With work I was unable to really do anything. My husband lost his job and I had to return to work. After about a year and a half into my job, I began to have issues driving. I went back to the eye doc. I was having trouble staying within the lane and I thought my vision was getting worse.

    I explained how I kept jerking the car and my son told I drove like a drunk. She explained that I have two lesions, one very big. She asked about my doctors. I told her I had a neuro because of the cognition and a rheumy. She asked why I have cognitive issues, I explained about the MS and she said ----

    I am sending photos to your neuro, you need to go ASAP. I believe you have MS. I told her my eye doc in Texas always said I did,so now I have three eye docs saying this-- So I make that appointment in the parking lot.

    The appointment was for August 15th--2017

    Ten days ago, I get an eye flare again-- I struggle with vision and then three days in at the hair dresser my left foot goes numb. I tell myself it went to sleep. That next day I wake up and I can barely walk. My foot is numb from the bottom of my big toe all the way to the tips of my toes. All five. I could only walk by sliding and flopping my foot- and hiking up my hip. Walking took so much effort that it drained me. Driving was difficult, and I could only ride my bike with the back of my foot working the pedal. I was incapable of flexing my toes and upper foot back. So riding in that position tired me so much that more twenty minutes and I was done. ( I usually ride 2 hours when flare free) To be truthful. Cycling saved me. Without the strong butt muscles, I would have been unable to walk as I had to hitch my leg forward from the upper thigh and hip.

    Finally after four or so days I looked it up. It was the most classic textbook case of foot drop ever.

    Today it's gone. I scheduled an appointment for Friday instead. I have videos of me walking and my doctor has my photo of my lesion-- it's took my body two years to get a new one, but it's a doozy.

    I am hopeful this is the end of a really long journey. Fourteen years to be exact. I am so tired,and hopeful I can be put on medicine that will finally help.

    ( as luck would have it I found one for the cognition that helps tremendously-- by accident I learned that it helps people with MS-- I can talk without hesitation now b/c of this,if you'd like to learn about it let me know)

    Peace ya'll.

    LBJ

    #2
    Hi asiel1

    Thanks for sharing your story with us.

    Originally posted by asiel1 View Post
    I am hopeful this is the end of a really long journey. Fourteen years to be exact. I am so tired,and hopeful I can be put on medicine that will finally help.
    It certainly has been a long limbo journey for you!

    Good luck at your appointment on Friday. Let us know what you find out.

    Wishing you the best!

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Ohhh! I just responded to your other post, but I hadn't read this one yet. Thanks for sharing more of your story with us.


      I'll think of you on Friday. Friday is my 6-month check-up appointment with my MS Specialist. For me, it's a 3 hour drive to KU Med Center in Kansas City, so we always stay overnight and make a mini-weekend of it. But, I've decided that the extra knowledge and experience that an MS Specialist has is worth the regular trips, as compared with the neuro that I had before. I really liked him, but he wasn't able to manage my MS as well as she is.


      So, yeah. I'll think of you on Friday while we are both having our appointments.
      ~ 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.

      Comment


        #4
        Hi asiel1,
        After reading your post, I'm starting to feel that you believe that it's your job to self diagnose! I read that you have seen many different doctors. But I don't see that you have consulted with any specialists! Why not ? Did you spend 6 years in medical school?
        Now that you have decided that you have MS, you need to see an MS specialist ! Don't be as foolish as I am !
        I have had MS for about 8 years. I did consult with several local MS specialists and got a confirmation of my MS. I didn't find an MS specialist, to be my regular physician, until about 3 years ago. My life has improved, greatly, since I began consulting with my current neurologist. I hope that you find a specialist and get some therapy. Good luck

        Comment


          #5
          Hi asiel1,

          You may or may not have MS, I hope all goes well with your appointment Friday.

          Lesions are not always related to MS as there are different causes for brain lesions. All of your symptoms, in regards to MS, would not all be related to brain lesions, the spinal cord would need to have lesions too.

          I went to the doctor and he gave me a steroid shot. It was the first time I ever willingly took one in years. I literally walked outside and was way better. Not in the hyper way normal people are, just in the way I was before all this started. As another test, I started taking anti inflammatories during flares.
          What anti-inflammatory is helping your flares? In the case of MS anti-inflammatories other than high dose steroids do not help.

          She asked why I have cognitive issues, I explained about the MS
          Why would you do that, you have never received a diagnosis of this disease
          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

          Comment


            #6
            Originally posted by JerryD View Post
            Hi asiel1,
            After reading your post, I'm starting to feel that you believe that it's your job to self diagnose! I read that you have seen many different doctors. But I don't see that you have consulted with any specialists! Why not ? Did you spend 6 years in medical school?
            Now that you have decided that you have MS, you need to see an MS specialist ! Don't be as foolish as I am !
            I have had MS for about 8 years. I did consult with several local MS specialists and got a confirmation of my MS. I didn't find an MS specialist, to be my regular physician, until about 3 years ago. My life has improved, greatly, since I began consulting with my current neurologist. I hope that you find a specialist and get some therapy. Good luck

            Jerry--

            I have had a journey, and no I do not have a degree of any sort,but I am definitely sick.

            I've had many docs because my hubs job changed and we moved, insurance is not always accepted by all docs. I did have a great MS specialist, he said I had probable MS but we moved.

            I do not currently have one, because I do not have a diagnosis of MS, and to be fair I do not think one exists here in Baton Rouge La.

            Good luck too. Do not need therapy, but perhaps you should speak to someone since you feel it fair to ridicule someone online.

            Comment


              #7
              Originally posted by SNOOPY View Post
              Hi asiel1,

              You may or may not have MS, I hope all goes well with your appointment Friday.

              Lesions are not always related to MS as there are different causes for brain lesions. All of your symptoms, in regards to MS, would not all be related to brain lesions, the spinal cord would need to have lesions too.



              What anti-inflammatory is helping your flares? In the case of MS anti-inflammatories other than high dose steroids do not help.
              I have taken turmeric in high doses for pain. It helped. It was suggested by my neurologist. I also have had high doses of steroids. They really do help tremendously


              Why would you do that, you have never received a diagnosis of this disease
              I explained to her that my last eye doc,my physical therapist, and prior MS specialist all explained that I possibly had MS. My eye doctor actually said I did because of a visual field test done during a flare of optic neuritis-- and also b/c of my optic nerve. He was my doctor for 12 years.

              To be frank, I really do not feel I need to explain myself to you. The last thing in the world that I want is to be sick. I'd rather be riding my bike,and enjoying work and my life now that my kids are getting out of the house. I do truly feel as you guys think it's funny to pick on people who may not have the means to go to numerous doctor visits to determine why they feel sick. MRI's and specialists are costly,and I am not on medicaid. I have a high deductible health care plan that pays nothing. I guess you probably think you are proving a point, and I get ya. There may be some people here who probably do not have the disease-- and perhaps anxiety or other disorder. I do not. For ten days recently I could barely walk. I had to suffer the humiliation of going to work like this. For this reason, I really do not believe I need to humiliated on a message board where I came for help and support.

              I really feel sorry for anyone who is truly sick and thinks this is a place of hope and support. I came back b/c this has been awful for me. I now remember why i quit coming here.

              Good luck to you all.

              Comment


                #8
                Hi asiel1,

                Please don't take offense as to what other's are typing. Sometimes it is really hard to "hear" what others say in the written word. I am truly sorry that you feel slighted. We all have varying opinions here and sometimes what is written is not what we want to hear.

                I understand that you are hurting and are sick. We all are to some degree and this is something that we all must remember at all times. We are a support group and should support one another regardless of what are "labels" are! Period!

                For what it's worth, I was diagnosed after being in limbo for 10 years after my first flare. Like you, it was a long painful stressful time to not know and I was misdiagnosed many times. I was dx with "probable" MS and that was good enough for my doctors and neurologist. I was put on a DMT right away after that. This was 18 years ago. So, all in all, 28 years and now I am SPMS.

                I wish you luck on your appt this Friday and please come back and share what you know. We do care about you
                1st sx '89 Dx '99 w/RRMS - SP since 2010
                Administrator Message Boards/Moderator

                Comment


                  #9
                  amiel1,
                  I apologize for my snarky response. I sound like that, sometimes. It comes from my Philadelphia DNA ! I really want you find some relief . My 'therapy' comment refers to Disease Modifying Therapy.
                  If your previous neurologist is an MS specialist, maybe his office could help you a referral for an MS specialist in your current area! You wrote that he/she diagnosed you with MS. Then, you wrote that you didn't have a formal diagnosis and couldn't get meds.
                  I hope you can find a doctor that will get to the bottom of your symptoms. Good luck

                  Comment


                    #10
                    amiel1 --

                    I think we've "connected", somewhat. But, I know that none of us, even those of us who struggled with "limbo" for awhile, can know, exactly what you're going through. Because our experiences aren't identical, and our responses and emotions are also different.

                    In my case, my limbo was shorter (2 years), and, because my symptoms were obvious and physical and noticeable, no one ever accused me of making them up, which, I know, some people have experienced.

                    As I said, I'll think of you on Friday, when we both have our appointments. For me, I expect it will just be a routine MS well-check. For you, hopefully, it will be an accurate diagnosis and the beginning of some helpful treatment.
                    ~ 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.

                    Comment

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