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    #46
    My latest MRI of the brain was normal. My evoked potentials were supposedly normal. My neurologist didnít have the complete results of my lumbar puncture but said one protein was abnormal and was waiting on the other protein results. He has referred me to UCLA for yet another opinion.

    Im lucky I have an understanding employer because my previous job would have fired me by now with all the work Iíve had to take off for tests and doctors appointments. Iím getting pretty discouraged that I may never get a diagnosis. Iím certain I have MS but thatís not what bothers me itís validation that Iím looking for. Id also like to get on some sort of DMT so I have the best chance at avoiding disability. Although Iím already pretty messed up.

    Comment


      #47
      Originally posted by Crazyguy View Post
      My latest MRI of the brain was normal. My evoked potentials were supposedly normal. My neurologist didnít have the complete results of my lumbar puncture but said one protein was abnormal and was waiting on the other protein results. He has referred me to UCLA for yet another opinion.

      Im lucky I have an understanding employer because my previous job would have fired me by now with all the work Iíve had to take off for tests and doctors appointments. Iím getting pretty discouraged that I may never get a diagnosis. Iím certain I have MS but thatís not what bothers me itís validation that Iím looking for. Id also like to get on some sort of DMT so I have the best chance at avoiding disability. Although Iím already pretty messed up.
      Hi Crazyguy ~

      Thanks for the update.

      I can understand your getting discouraged, with having no diagnosis to explain your symptoms.

      Are you going to UCLA for another opinion?

      Maybe they will figure it out.

      Take good care of yourself while going through this very trying time, ok?

      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


        #48
        Hello Crazyguy, I know how discouraging it can be (I have been there),I hope UCLA can give you some answers.
        God Bless Us All

        Comment


          #49
          Yeah, my current neurologist set me up with them. I have an appointment on October 24th

          Originally posted by KoKo View Post
          Hi Crazyguy ~

          Thanks for the update.

          I can understand your getting discouraged, with having no diagnosis to explain your symptoms.

          Are you going to UCLA for another opinion?

          Maybe they will figure it out.

          Take good care of yourself while going through this very trying time, ok?

          Take Care

          Comment


            #50
            I'm glad that your current employer is understanding.

            I hope you get some answers at your October 24 appointment.
            ~ 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


              #51
              Iíve been hesitant to share what has been going on with me out of embarrassment. But I suppose Iím ready now. I went to UCLA and the neurologist there told me my current neurologist thinks my problems are psychological. She told me she would look over my records and get back to me. I had some difficulty with this and my psychologist told me to take a break from seeking a diagnosis for a while. The UCLA doctor concurred with my neurologist.

              Iíve suspected this whole time my doctors have been lying to me to protect me from psychological harm. My anxiety for the past 3 years has been so debilitating that it has affected everything in my life. But I noticed that with that last round of what I would consider lies. I felt a sense of relief. I still have my moments but Iím much happier and less anxious. I know if I can keep up my mood and positive attitude my doctors will eventually diagnose me. Iím not currently seeing a neurologist but weíll see what happens. I still have symptoms and I deal with them. Weíll see what the next year brings. I donít think Iíll ever be the same but I think I can live my life now.

              Comment


                #52
                I don't have any advice for you.

                But thanks for keeping us updated.
                ~ 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


                  #53
                  Originally posted by Crazyguy View Post
                  Iíve been hesitant to share what has been going on with me out of embarrassment. But I suppose Iím ready now. I went to UCLA and the neurologist there told me my current neurologist thinks my problems are psychological. She told me she would look over my records and get back to me. I had some difficulty with this and my psychologist told me to take a break from seeking a diagnosis for a while. The UCLA doctor concurred with my neurologist.

                  Iíve suspected this whole time my doctors have been lying to me to protect me from psychological harm. My anxiety for the past 3 years has been so debilitating that it has affected everything in my life. But I noticed that with that last round of what I would consider lies. I felt a sense of relief. I still have my moments but Iím much happier and less anxious. I know if I can keep up my mood and positive attitude my doctors will eventually diagnose me. Iím not currently seeing a neurologist but weíll see what happens. I still have symptoms and I deal with them. Weíll see what the next year brings. I donít think Iíll ever be the same but I think I can live my life now.
                  Hello Crazyguy ~

                  Thank you for sharing the update on your neuro visit, even though it was difficult for you.

                  You're doing the right thing by taking care of your anxiety and attitude.

                  Maybe taking a break from seeking a diagnosis for awhile, as suggested by your psychologist, will be beneficial.

                  Let's hope your symptoms lessen or subside. Time will tell.

                  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


                    #54
                    Hi Crazyguy.

                    I have been thinking of you lately and how things are going. Thank you for updating

                    Itís great that you see a Psychologist. Have you considered seeing Psychiatrist? A Psychiatrist can prescribe medications that can be helpful for your anxiety.

                    Anxiety can cause many physical symptoms. If your symptoms are a physical manifestation of your anxiety you could see a decrease of your symptoms. Treating your anxiety could help you and your Drs. in determining if symptoms are a physical manifestation of anxiety or not.

                    Take care
                    Diagnosed 1984
                    ďLightworkers arenít here to avoid the darknessÖthey are here to transform the darkness through the illuminating power of love.Ē Muses from a mystic

                    Comment


                      #55
                      Originally posted by SNOOPY View Post
                      Hi Crazyguy.

                      I have been thinking of you lately and how things are going. Thank you for updating

                      Itís great that you see a Psychologist. Have you considered seeing Psychiatrist? A Psychiatrist can prescribe medications that can be helpful for your anxiety.

                      Anxiety can cause many physical symptoms. If your symptoms are a physical manifestation of your anxiety you could see a decrease of your symptoms. Treating your anxiety could help you and your Drs. in determining if symptoms are a physical manifestation of anxiety or not.

                      Take care


                      Iíve been seeing a psychiatrist since I was 18 for my psychotic disorder. I have been taking Ativan for my anxiety. I normally donít have many symptoms except cognitive ones are daily. And when it rains my muscles in my arm and leg cramp up. Sometimes I get fatigue that lasts for a couple days but thatís about it.

                      I asked my psychiatrist a while back if he felt I had somatoform disorder and he told me I definitely donít have that. Iím certain that next year Iíll get another opportunity to try. I will let everyone know if anything happens.

                      Comment


                        #56
                        Itís been a while since Iíve posted my news here so just to give everyone an update.

                        Iíve been having weakness and pain in my legs for about 6 months now. My ability to stand for long periods of time and walk far distances has diminished over time. I can only walk a little over a 1/4 mile on the treadmill now before my legs start to buckle and itís too painful to continue. I went to my pcp and heís referring me to physical therapy which I start on Monday. My anxiety is under control and my fatigue is being combated by 200 mg of provigil and a little bit of coffee every day. I was having psychosis problems earlier in the year and we switched meds and I feel much better now after I got used to them.

                        im taking a little time off of work right now because my job requires me to stand all day. I just canít do it anymore. I do worry about not being able to do my job anymore and how Iíll be able to support my family. Weíll see what happens. I hope I get some answers.

                        Comment


                          #57
                          Hi Crazyguy

                          Originally posted by Crazyguy View Post
                          Iíve been having weakness and pain in my legs for about 6 months now. My ability to stand for long periods of time and walk far distances has diminished over time. I can only walk a little over a 1/4 mile on the treadmill now before my legs start to buckle and itís too painful to continue. I went to my pcp and heís referring me to physical therapy which I start on Monday.
                          Good luck with your physical therapy. Hope you have improvements with your walking, as well as relief from the pain.

                          Originally posted by Crazyguy View Post
                          My anxiety is under control and my fatigue is being combated by 200 mg of provigil and a little bit of coffee every day. I was having psychosis problems earlier in the year and we switched meds and I feel much better now after I got used to them.
                          Glad that your anxiety and fatigue are being treated, and that you're feeling better.

                          Originally posted by Crazyguy View Post
                          im taking a little time off of work right now because my job requires me to stand all day. I just canít do it anymore. I do worry about not being able to do my job anymore and how Iíll be able to support my family. Weíll see what happens. I hope I get some answers.
                          Try to remain hopeful, and take each day as it comes.

                          Let us know how your PT goes.

                          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


                            #58
                            Hello Crazyguy, I hope the PT helps with the weakness & pain in your legs. I also suffer with weakness and pain in my legs. I used to walk on the treadmill and loved it but not any more so now I ride a stationary bicycle. Getting your anxiety and fatigue under control is wonderful.

                            Wishing you all the best in PT.
                            God Bless Us All

                            Comment


                              #59
                              Just an update. I realized since "my brain blew up" I've been having mental health issues like psychosis and paranoia about the people in my life. I'm on a good medication now that helps control that. I realize nobody has been lying to me and although I still think I have ms, its a hard disease to diagnose sometimes.

                              Comment


                                #60
                                Originally posted by Crazyguy View Post
                                Just an update. I realized since "my brain blew up" I've been having mental health issues like psychosis and paranoia about the people in my life. I'm on a good medication now that helps control that. I realize nobody has been lying to me and although I still think I have ms, its a hard disease to diagnose sometimes.
                                Oh! I'm so glad you've found a medication that works. During the first 10 years or so of my MS (2002 - ?), mental health symptoms were really common for me (mostly mania, occasional other stuff too). After I switched to Copaxone, that seemed to be a much better fit for me and kept that under control. But, I remember feeling so out of control during those years.
                                ~ 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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