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Finally diagnosed with ms

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    Finally diagnosed with ms

    Hello everyone, this is my first time here. After many years I finally have dx of rrms and will be starting copaxone soon.

    When I think back the symptoms began when i was about 17, I didn't seek medical attention until my mid 20's I am now 47. It has been a long trip and I hadn't expected a dx. I just can't understand why it took so long to get a dx. The new doc that i'm seeing said that there were lesions in my brain and spinal mri years ago. I was told that the mri's were neg.

    Over the years i have had many bouts of optic neuritis and many other symptons. I think that i am more angry that was no dx for so long than being upset about having ms. I have been to so many doctors and been told that it was many different things including that it was all in my head. I even doubted myself and believed that it was in my head. I want to let everyone out there who is searching for dx not to give up like i did.

    #2
    pug,
    I am glad your search is over. But it really isn't. You need to keep yourself as healthy as you can. I hope you do. I am pulling for you. And the rest of us, here, probably feel the same.
    Do me a favor. Figure this out for me. Help me get to the bottom of this, so I can go back to the happy, dumb, S.O.B, I was 5 years ago. This disease sucks. Good luck

    Comment


      #3
      HI
      I CAN UNDERSTAND FOR SURE I WAS TOLD IN MARCH OF THIS YEAR AND STARTED COXPANONE APRIL13.IT SUCKS TO TAKE A SHOT EVERYDAY.MS HAS TOOK MY LIFE AND I M ANGRY O WELL I TRY EVERYDAY TO MAKE IT THOUGH ONE MORE DAY
      THANK YOU
      ANKIA58

      Comment


        #4
        Originally posted by puglover View Post
        Hello everyone, this is my first time here. After many years I finally have dx of rrms and will be starting copaxone soon.

        When I think back the symptoms began when i was about 17, I didn't seek medical attention until my mid 20's I am now 47. It has been a long trip and I hadn't expected a dx. I just can't understand why it took so long to get a dx. The new doc that i'm seeing said that there were lesions in my brain and spinal mri years ago. I was told that the mri's were neg.

        Over the years i have had many bouts of optic neuritis and many other symptons. I think that i am more angry that was no dx for so long than being upset about having ms. I have been to so many doctors and been told that it was many different things including that it was all in my head. I even doubted myself and believed that it was in my head. I want to let everyone out there who is searching for dx not to give up like i did.
        Just wanted to say hello from someone who is not diagnosed but my husband has had a long struggle trying to find out what he has....they thought he had ALS {thank God it wasn't} but still frustrating not knowing for years now. People/Dr's do begin to think it is all in your head!
        I say AMEN to that! It is in your head!! {all the MS plauqes that is} Well those Plaques can be on the spine too I have heard.....they are called Plaques right?

        Usually the Doc's think us women are crazy....been there done that, so it is quite a new experience for my husband to be treated like he's crazy after so many symptoms for so many years without a diagnosis. It is sad it takes them so long considering the new medications they have that can really help if you finally get a diagnosis.

        My husband I believe has the remitting kind as well. I am quite sure this form of MS is even harder than most to really pinpoint and figure out. I guess we will see after he gets to ANOTHER NEUROLOGIST! Added to the frustration of not knowing what a person is dealing with is all of the medical costs we have put out year after year only to get frustrated and left broke
        Thank you again for your enchouragement to keep looking for a diagnosis.

        Comment


          #5
          it is (all in our heads) and spinal cord

          Hello and welcome, Boy do I Know what you have been through. I was diagnosed in 1998 but my files and records show I was having problems back in the 70's and it was all in my head. My Gp sent me to a internal dr. once but he sent my records with me which of course I unsealed and it pretty much said that it was(all in my head). So when i got to this dr. he walked in and introduced himself and then the first thing he did was ask me in a very subdued tone, well tortis what do you think is wrong with you? Of course he had read my gp's comments and he had already made his mind up before he even looked at me. Later when my gp retired he came in to my place of employment and I told him you know what doc, you were right it was (all in my head). I have M.S. He got a real funny look on his face and said, YOU DO ? I doubted my self for many years and this disease sucks but that just made it worse not knowing what the heck was going on. Of course there is a lot more to this story, just like I am sure there is to yours. I wish you the best of luck but I really wish we both had something more fixable, God only knows we waited long enough just to find out.
          Smile it make people wonder what you have been up to!
          Tortis

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            #6
            Maybe it's God's way of easing us into knowing we have a chronic disease. Maybe dealing with it over time w/out a diagnosis allows us to not be labeled and what if ourselves and scare ourselves to death!

            Then again, Not knowing may cause the same dilemma!

            Still in limbo....

            Comment


              #7
              Hi Pugr....
              My story is very similar and likewise a long,even longer road. I had problems keeping up with the other kids, quit baseball about age 12, plenty of problems thru HS and developed MS related diplopia complication at age 18. No one questioned WHY I got diplopia at age 18 till I was in my 60s!

              I am also diabetic and for decades my neuro issues were automatically blamed on the diabetes. A fw years ago a new eye doc opened the MS can-o-worms which led to a full MS workup and Dx with long standing MS.

              Gomer Sir Falls-a-lot

              Comment


                #8
                Puglover, congrats are hardly in order, but I'm happy that you have some answers.

                I believe that it's those playing God who are responsible for the years many of us (with obvious sx's, and a 'clear MRI' despite the presence of lesions) spend before a diagnosis is made.

                I relocated 3k miles accross country after many years of obvious unexplained sx's (bladder, ON, diplopia, cognative) and a MS dx of 5+yrs with DMDs, to have a stroke neuro I saw only for a MS neuro referral, who instead reverse my MS dx. It sounded all too familiar and I ran (figuratively) as far away as fast a I possibly could. I eventually found a local MS doc without a referral.

                The new MS neuro looked at my medical history, MRIs, clinical exam and said he couldn't understand what dx other than MS was possible.

                I can't explain the anger and betrail I felt for years after my dx and imagine it all beginning again after my relocation.

                There's a fair amount of mysogny in the medical profession. I've wittnessed it up close and personal, and seen a really agnry ugly version of it on national tv during an expose type program. It's now practiced in a 'kinder, gentler' version, but still practiced.

                Medical professionals who implied, suggested, even dx mental illness to the extent I questioned my own sanity is crule beyond belief.

                My one regret is that I didn't get therapy after my MS dx. It didn't even cross my mind though. I spent too much time after my dx in an angry state of mind that caused me a lot of unnecessary distress that added to my ms sx's. It's my one recommendation to you.

                Comment


                  #9
                  Welcome Pug.. just sorry for the reason. Good luck on fighting and keeping your MonSter at bay.

                  MSW..... If you think doctors are arrogant and dismissal of women, then try being a guy with a problem. IF we go to a doctor, we often get ignored or in one case I was sent to the VA SHRINKS for complaining something else was wrong. That something "else" turned out to be MS, after over 25 years!

                  Even my best doc (still with him), my fam doc dismissed my ankle complaints 5 years ago, despite an obvious & clearly visible bruise. A week or two later I simply went to a walk-in clinic in pain. The doc there did an Xray and found a bone spur was tearing it up & bleeding from the inside due to my weak ankles.

                  When a guy goes in they consider you a sissy, wimp etc. BUT if you land in the hospital via ambulance (happened to me more than once) after getting the Dr's boot. One doc I was sent to by my boss at work, gave me a clean bill of health and sent me back in time for lunch. That SAME evening, a few sips of pop and meatwagon ride to ER and admitted with diabetes. The co doc came in screaming at me and gave me holy hell for not having my diabetes under control. Heck I did not know I was diabetic (yet).

                  Even in the Navy, I had one doc that kicked me out for over a week. One morning he saw me waiting outside his door waiting for 8am sick call. He did not even wait for 8am. He came out, grabbed me by my shirt and marched me down to Xray, saying he was going to PROVE there was nothing wrong with me. Next thing he was arranging an ambulance to take me to the hospital. I was written up for CRIMINAL violation of UCMJ for not seeking medical attention. The doc at the hospital said there was NO WAY I did not know I was sick! The case was quickly dropped after I requested my sick bay records for the previous 10 days showing I tried repeatedly to get treatment.

                  It still happens today. I was sent to urology twice this year, once by my VA MS doc and the last a VA gp because my kidney function had declined. The uro doc (I use the term loosely) simply said deal with the voiding issues as it was normal for a man my age with MS to boot.

                  Just a week ago I had to learn to self-cath due to a retention level TRIPLE the NIH std even for a man my age, and I go back this week for testing (none of this at the VA of course). I do not get my diabetes care thru the VA either, their standards are absurd.

                  Gomer Sr Falls-a-lot

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                    #10
                    What did Tortis just say??

                    Say Tortis,
                    when you commented and said you "unsealed" your records, what on earth do you mean?? Am I just stupid and did not know they sealed records??

                    I kinda have had the feeling that they were treating me and my husband like they did Elaine on a Sienfeld Episode{hopefully you have watched it and know my reference here} when Elaine was going from Doc to Doc who refused to really treat her because each new Doc had "notes" on her and she was labeled "DIFFICULT" so she could not get any treatment.

                    It of course was a comedy, but was it based on the reality that a Doc can really label you with glaring titles like "patient is a hypochodriac" for instance and this will be passed on to another Dr. to judge you!!!????? What a NIGHTMARE!!

                    I just thought I was being paranoid about the way my husband has been treated by a few docs, especially the ALS specialists........I guess that is why,when he said my husband did NOT have ALS they chose NOT to look for an answer for his symptoms elsewhere!! I would have assumed they would send him in another direction to find another Disease or reason why he has Tongue Spasticity/weakness that comes and goes,Extreme Fatigue, leg weakness......I guess it is just ANXIETY???

                    Lord help me! I guess I feel like Truman on the "Truman Show" when he ran his boat into the fake sky!!! I really thought that Dr.'s did not have THAT much controll over our lives, but they DO!!! UUUGGGH!

                    For those out there who do not know the "Sienfeld" show or "The Truman Show" movie, please forgive me for watching too much T.V./Movies and relating too many of my own life senarios to these fake stories!

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