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FINALLY DIAGNOSED and feeling very sad today

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    FINALLY DIAGNOSED and feeling very sad today

    My journey started about 6 years ago. Lots of MRI's, balance issues, cognitive issues, blood tests, spinal taps, neuro psych testing etc....
    Went to neuro after latest spinal tap, blood work, last MRI was innumerable brain lesions.
    Spinal tap only positive for one band.
    What really has me upset is she said it could be Primary Progressive instead of Relapsing/Remitting.
    I do not have the typical exacerbations but my cognitive issues are worsening and the lesions increase. Still waiting for some lab work but she said regardless, she will DX me and said I should consider if I would want to go on meds or not.
    Just diagnosed yesterday. Feeling very sad and depressed.
    Although I thought this day may come, the reality has set in and I fear the future.
    Just wondering how others felt when diagnosed.

    #2
    Well, when I was diagnosed.. I cried then I got mad and I have been angry ever since. I was diagnosed in early summer 2009. I suggest that you see an MS specialist . Do whatever it takes to get in to see a specialist. I also suggest that you go on a DMD asap. I wish you the best. Good luck

    Comment


      #3
      I was diagnosed this Monday and I'm a basket case. I just got done with my nervous breakdown that I have daily. I'm sure I'll have more before the day is out.

      I'm calling crisis hotlines and people at MS societies all looking for I don't even know what. I just want to feel like myself again even if these symptoms don't go away. I'm starting to cry again now.

      It's what ever that happened to me this last go around. All the other flares went away but this one just won't quit.

      Having MS is one thing, having it be black holes and permanent damage is different. I just don't understand what's happening and I don't think I want to know.

      I called my priest and cried like a crazy woman. You know it's bad when the priest don't know what to say.

      So yeah... The suck part is nobody can help. No one can make these symptoms go away and no one can make this better.

      Comment


        #4
        I was, actually, relieved. Like you, I'd been in limbo for awhile. Lots of tests, lesions, health issues.

        I'd been diagnosed with "probable" things a few times, but, doctors, even Mayo Clinic doctors, had remained uncertain what was going on, neurologically, for awhile.

        A diagnosis of MS, while not something to be excited or happy about, was finally something that I could hold onto, something I could treat, something that I could get my head around. My symptoms, no matter what I had, and, whether I ever got dx'd or not, were not going to go away miraculously.

        So my diagnosis was a relief and the beginning of being able to do something about it, even though I couldn't reverse it.
        ~ 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


          #5
          Having a final diagnosis of MS made living through each day less afraid. Having a name to all the different symptoms meant coming up with a plan to slow this brain disease down. When I get angry because it takes me a lot longer to do what used to be mindless tasks, I remind myself that I do have a brain disease and it could be worse. It's not Alzheimer's.

          Comment


            #6
            What you are feeling is a natural response, jskmsss, and you have every right to feel sad and depressed and I'm sorry you are feeling so down. What you are feeling is all part of the grieving process we've all been through or are going through right now.

            Just wondering how others felt when diagnosed.
            Just last month a thread was going around talking about this. You'll see varying emotions expressed and all are valid. Just like yours.
            http://www.msworld.org/forum/showthr...ger-warning%29

            You're not alone here. We're here to support you on the journey ahead.
            Take care
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

            Comment


              #7
              Originally posted by JerryD View Post
              Well, when I was diagnosed.. I cried then I got mad and I have been angry ever since. I was diagnosed in early summer 2009. I suggest that you see an MS specialist . Do whatever it takes to get in to see a specialist. I also suggest that you go on a DMD asap. I wish you the best. Good luck
              I am seeing a MS specialist. It isn't getting any easier for you since DX? I am on the verge of tears all day long. Trying to be positive bur not doing a great job.
              Are you still able to work?

              Comment


                #8
                MAMABUG

                Could you please share what your experience was like going to May Clinic. My neuro mentioned she may consider sending me there. At what point were you sent. did you have MRIs with lesions, positive spinal tap EVP? Did Mayo Clinic do additional tests or just evaluate your records. iI am asking these questions, to help me decide if it is even worth the trip. I appreciate your assistance. A few years ago, I did go to the a large hospital with aMS clinic.


                I'd been diagnosed with "probable" things a few times, but, doctors, even Mayo Clinic doctors, had remained uncertain what was going on, neurologically, for awhile.

                A diagnosis of MS, while not something to be excited or happy about, was finally something that I could hold onto, something I could treat, something that I could get my head around. My symptoms, no matter what I had, and, whether I ever got dx'd or not, were not going to go away miraculously.

                So my diagnosis was a relief and the beginning of being able to do something about it, even though I couldn't reverse it.[/QUOTE]

                Comment


                  #9
                  jskmssss

                  Originally posted by jskmssss View Post
                  Could you please share what your experience was like going to May Clinic. My neuro mentioned she may consider sending me there. At what point were you sent. did you have MRIs with lesions, positive spinal tap EVP? Did Mayo Clinic do additional tests or just evaluate your records. iI am asking these questions, to help me decide if it is even worth the trip. I appreciate your assistance. A few years ago, I did go to the a large hospital with aMS clinic.
                  ...
                  I'll tell you what I remember. It was in 2002, near the beginning of my symptoms. My MS began with a bang at the end of January -- stroke-like symptoms and an ambulance ride to the ER, followed by a hospitalization. For the first 3 months, doctors assumed that it was likely a stroke. Then, in April, I had my 2nd flare, with very different symptoms -- mostly psychotic and manic. At that point, they realized that, although it was definitely something neurological, it was not a stroke.

                  After lots of tests, and two months of me having such poor memory that I still only remember two 5-second snippets during April through June, my husband took me to Mayo Clinic. And two months of sleeping 16 - 20 hour days.

                  At that point, I was still sleeping much of the time, but, my memory was beginning to return. So, like I said, I'll tell you what I remember.

                  I was there for approximately two weeks. Prior to that, I'd already had multiple MRI's, a positive spinal tap and lots of other tests. Every day at Mayo Clinic, I had one or two appointments, mostly testing (and I don't remember everything they tested for), and also sometimes seeing some specialists.

                  When we finally left, Mayo Clinic gave me a dx of "probable central nervous system lupus", but did not rule out MS. They wanted to schedule a 90-day follow-up with me, but it was a 12-hour drive, so I declined, and they set me up with a rheumatologist (for the CNS lupus) and said to continue with my general neurologist. A little over a year later, following additional flares and an additional MRI, my local neuro was able to amend the dx to MS, which was confirmed a number of years later when I switched to an MS Specialist.

                  Yes; I think it was worth it. In my case, they were unable to dx me. But my MS was complicated and exhibited very a-typical symptoms. They were kind; they were professional. Also, in my case, the purpose of Mayo Clinic was to attempt to get a dx.

                  If you are already dx'd, what is the reason your doc is considering referring you there?
                  ~ 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


                    #10
                    It's ok to feel sad

                    I received my diagnosis on April 7, 2015 (the day that will on in infamy). I was pretty sure I had MS, even though my husband kept saying no. It stinks, there are no two ways about it. I just want you to know that it is ok to feel the way you feel. I have good days and bad days. It is ever present in my mind. I wake up each day assessing the way my body feels before I even get up. I put a post in the General Q&A section about when does it get easier...everyone had a different response. Hang in there, you aren't alone.
                    Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

                    Comment


                      #11
                      MAMABUG ......

                      If you are already dx'd, what is the reason your doc is considering referring you there?

                      MY VEP was normal, spinal tap only one band, major issues with balance, had some falls,
                      innumerable lesions. I guess what has her questioning it is I dont have the remitting/releasing symptoms. I have had numbness in feet and hands, fine tremor in hand, cognitive issues,
                      Neuropsych testing seems to be pointing to MS too. I have been tested for every disease such as Syphilis, Lymes Disease, Sorjerns and many others. That is why she is considering Primary Progressive which really freaked me out. To start off with that DX would be scarey. However she
                      wasn't sure about meds, She told me to give some consideration to meds.
                      I just feel so bad and depressed. I just want find a corner and be left alone forever. I am working a few hours but not sure if I should say something. I'm cranky so hubby is pulling away. Right now
                      I hate my life !

                      That was a long time to go for testing . 2 weeks ??? very expensive hotels, meals etc...





                      Originally posted by Mamabug View Post
                      I'll tell you what I remember. It was in 2002, near the beginning of my symptoms. My MS began with a bang at the end of January -- stroke-like symptoms and an ambulance ride to the ER, followed by a hospitalization. For the first 3 months, doctors assumed that it was likely a stroke. Then, in April, I had my 2nd flare, with very different symptoms -- mostly psychotic and manic. At that point, they realized that, although it was definitely something neurological, it was not a stroke.

                      After lots of tests, and two months of me having such poor memory that I still only remember two 5-second snippets during April through June, my husband took me to Mayo Clinic. And two months of sleeping 16 - 20 hour days.

                      At that point, I was still sleeping much of the time, but, my memory was beginning to return. So, like I said, I'll tell you what I remember.

                      I was there for approximately two weeks. Prior to that, I'd already had multiple MRI's, a positive spinal tap and lots of other tests. Every day at Mayo Clinic, I had one or two appointments, mostly testing (and I don't remember everything they tested for), and also sometimes seeing some specialists.

                      When we finally left, Mayo Clinic gave me a dx of "probable central nervous system lupus", but did not rule out MS. They wanted to schedule a 90-day follow-up with me, but it was a 12-hour drive, so I declined, and they set me up with a rheumatologist (for the CNS lupus) and said to continue with my general neurologist. A little over a year later, following additional flares and an additional MRI, my local neuro was able to amend the dx to MS, which was confirmed a number of years later when I switched to an MS Specialist.

                      Yes; I think it was worth it. In my case, they were unable to dx me. But my MS was complicated and exhibited very a-typical symptoms. They were kind; they were professional. Also, in my case, the purpose of Mayo Clinic was to attempt to get a dx.

                      If you are already dx'd, what is the reason your doc is considering referring you there?

                      Comment


                        #12
                        Boymom

                        Thanks for your response. I hope I am able to get thru this.



                        Originally posted by Boymom123 View Post
                        I received my diagnosis on April 7, 2015 (the day that will on in infamy). I was pretty sure I had MS, even though my husband kept saying no. It stinks, there are no two ways about it. I just want you to know that it is ok to feel the way you feel. I have good days and bad days. It is ever present in my mind. I wake up each day assessing the way my body feels before I even get up. I put a post in the General Q&A section about when does it get easier...everyone had a different response. Hang in there, you aren't alone.

                        Comment


                          #13
                          Ok. Thanks for your explanation. It can be expensive to go to Mayo Clinic, rather than somewhere closer. Perhaps, though, they could give you some good answers, or, maybe just an MS Specialist, if you are currently seeing a general neurologist?
                          Originally posted by jskmssss View Post

                          That was a long time to go for testing . 2 weeks ??? very expensive hotels, meals etc...
                          Yes; it could be. We stayed at Rochester Mennonite Guest House while we where there. That helped keep expenses down. http://aroundrochestermn.blogspot.co...minnesota.html
                          ~ 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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