Announcement

Collapse
No announcement yet.

40 long years

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    40 long years

    Its been a long time since I was active on a forum (anyone here from BYDLS about 10-12 years ago?), so please excuse me if I babble. After 40 years of problems, Im finally getting my MS diagnosis! Havent met with the neuro yet, but my results have been posted online. Anyway, Ive been dancing in my head for several days now.

    Too many doctors over the years wouldnt take me seriously. The old family doctor spent 7 years telling me that I was a drug-seeking teenager who just needed to adapt to my growing pains. The next made it clear that I was a hypochondriac with panic attacks and wanted me to take potentially-addictive tranquilizers. Ive been with the current GP for 32 years now, and while shes faithfully sent me for tests and to specialists, shes also been open from the beginning that she didnt know what was wrong with me.

    Unfortunately, the ophthalmologist, when I was having double and blurred vision, gave me a clean bill of health and walked away. The upper GI, when I was having trouble speaking and swallowing, had me surrounded by puzzled technicians explaining that I just wasnt moving my tongue the right way, and if Id learn how to do it properly all my problems would go away.

    The ER declared that I was clearly an alcoholic, because there was no other reason Id be toppling over backwards and giving myself concussions (forget the fact that Ive never been a drinker). The MS specialist that was notified by an alert ER physician informed me that my only problem is that I smoke and no tests are necessary. The next neuro explained that 15 was too young for MS and 40 too old, so he absolutely wouldnt even consider it. After 3 visits, he told me not to come back because there was nothing more he could for me. Meanwhile, I was using a cane on a daily basis and occasionally needed a wheelchair. There were nights when my teenaged daughter had to feed me through a straw, because I could neither hold a fork nor swallow solid foods.

    I pretty much gave up on doctors after 2007. Id lost my health insurance and had run out of money for co-pays before that. My parents thought I needed psychiatric help. My extended relatives called me a drunk. My kids were the only ones who stood by me, because they saw me go to work every day and dealt with my exhaustion after I got home.

    Four years ago, I was diagnosed with a series of idiopathic TIAs, which have now numbered more than 40. After the 6th one, Id lost most of my remaining strength and stamina. My cognition and short-term memory went south. I took a significant pay cut to switch to a less-active job, and then I had to change again when I realized my body was failing me.

    Last Fall, I spoke with my GP about the possibility of Disability, and she explained that I simply didnt have the medical records or diagnosis necessary. By Spring, I was missing so much work that I requested intermittent FMLA. Since my employer refused to alter my hours until very recently, I started running through those days like crazy. I live alone now, the kids are long gone, my mothers a widow. Fortunately, she was left a rather wealthy widow, so shes been helping me out financially, but theres not enough money to support 2 households indefinitely. Im currently working four 4-hour days, but its a struggle to do that and I wind up calling off half the time.

    My GP referred me to a neuro about whom shed heard good things, and I adore him! His eyebrows raised when I explained that Id had problems since age 15, but he never patronized me or treated me like a nutcase. Since he didnt have access to my old records, he said wed just start over from the beginning to rule things out, and that maybe its time to look for the less-common illnesses. Ive had 26 blood tests in one day, another MRI, an EMG, nerve conduction test, sleep study, and spinal tap. He also believes that the TIAs were misdiagnosed and were actually MS attacks. Hes done more for me in 3 months than all the other doctors put together over the last 4 decades. I see him again in 2 weeks to discuss possible treatment options, and I finally have hope.

    #2
    Dear Nora,

    Your story broke my heart. I'm so sorry you've had a lifetime of unresolved problems. I can't even imagine the frustration you've had after all these years! Whew~~ I would have had to be committed! (I was in limbo for10 years and I thought that was a long time.)

    But, now you have a neuro that has taken you seriously. Hooray! Even though no one really wants to have MS, you must relieved. I wonder what kind of treatment plan you and your Dr. are discussing? You will have to let us know. We have a forum discussing DMT's that you might want to look through and see what others are taking. https://www.msworld.org/forum/forumd...amp-Treatments

    We also have a thread about different DMT comparisons - https://www.msworld.org/forum/showth...omparing-DMT-s

    Help and hope is on the way! Thanks for sharing your story and a warm welcome

    Keep in touch and let us know how it's going for you!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      WOW! That's an incredible story. Hopefully our new neuro will be able to help you out. You still smoking?
      The future depends on what you do today.- Gandhi

      Comment


        #4
        Nora - welcome. I am so sorry to hear your story. I can only imagine how frustrating your journey was. It is one thing to pass things off after doing appropriate testing and follow up, totally another when not even explored.

        I really get mad when I hear how little some neuros know about MS. Too young at 15, too old at 40? I hope they are no longer practicing.

        I am glad you have found a good neuro. I hope that you start to feel better soon. Even though noone wants to have MS, I am sure it is such a relief to have a diagnosis.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Hello NoraS and welcome!

          Originally posted by NoraS View Post
          My GP referred me to a neuro about whom shed heard good things, and I adore him! His eyebrows raised when I explained that Id had problems since age 15, but he never patronized me or treated me like a nutcase. Since he didnt have access to my old records, he said wed just start over from the beginning to rule things out, and that maybe its time to look for the less-common illnesses. Ive had 26 blood tests in one day, another MRI, an EMG, nerve conduction test, sleep study, and spinal tap. He also believes that the TIAs were misdiagnosed and were actually MS attacks. Hes done more for me in 3 months than all the other doctors put together over the last 4 decades. I see him again in 2 weeks to discuss possible treatment options, and I finally have hope.
          Thank goodness for your new neuro!

          Let us know how your appointment goes. Thank you!

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

          Comment


            #6
            Unbelievable NoraS, I am so sorry you've had to endure so much.

            It's sounds like hope is on it's way and I wish you all the best.
            God Bless Us All

            Comment


              #7
              HI

              WOW a dx is so important takes allot of us a while to get it but not that long ...just a case of doctors not knowing what they are doing ..

              Comment


                #8
                Welcome, NoraS!

                Wow; you've been through a never- ending nightmare.

                I'm so glad that you've found a neurologist who will listen to you. Hopefully, you will find some assistance.
                ~ 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


                  #9
                  Saw the neuro this morning, and my plan to skip the drugs went by the wayside. I've deteriorated badly enough since July that he wants to start Ocrevus as soon as my insurance approves it. Without it, I'm guaranteed to be in a permanent wheelchair within a couple years.

                  He's still running more tests, and I'll be fitted with a CPAP over the next couple weeks.

                  It's partly a little scary, now that I have an actual diagnosis and plan, but part of it is enormous relief. Right now I'm dealing with the family's fears. I took my mother along (she's a retired RN), and she had to walk away to cry alone in the bathroom for a bit. Took my son to lunch, and he went off on his own, too. Now I'm waiting to hear from the daughter. I'm allotting us one box of tissues for today, and then that's it!

                  Comment


                    #10
                    Originally posted by NoraS View Post
                    Saw the neuro this morning, and my plan to skip the drugs went by the wayside. I've deteriorated badly enough since July that he wants to start Ocrevus as soon as my insurance approves it. Without it, I'm guaranteed to be in a permanent wheelchair within a couple years.

                    He's still running more tests, and I'll be fitted with a CPAP over the next couple weeks.

                    It's partly a little scary, now that I have an actual diagnosis and plan, but part of it is enormous relief. Right now I'm dealing with the family's fears. I took my mother along (she's a retired RN), and she had to walk away to cry alone in the bathroom for a bit. Took my son to lunch, and he went off on his own, too. Now I'm waiting to hear from the daughter. I'm allotting us one box of tissues for today, and then that's it!
                    Hi Nora~

                    Thank you for the update.

                    Glad for you that you now have a plan, and some sense of relief.

                    Good luck with the Ocrevus treatment - hope it serves you well.

                    Keep us posted with how you are doing.

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

                    Comment


                      #11
                      I have been on Ocrevus since June 2017 and I haven't had a relapse.

                      I wish you all the best on Ocrevus.
                      God Bless Us All

                      Comment


                        #12
                        An excellent choice, Nora, and I'm sure it must be a relief to know and have a plan. Your family will come around. You all need time to process this.

                        Let us know if you get approved and how it goes.
                        Take care
                        1st sx '89 Dx '99 w/RRMS - SP since 2010
                        Administrator Message Boards/Moderator

                        Comment

                        Working...
                        X