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    #31
    Hi Rdmc, thank you for your reply.

    Some doctors have have told me it was stress related but that was a long time ago. I did suspect they thought I had conversion disorder. But this was also while I was in the middle of a psychotic episode. My psychiatrist who Iíve been seeing for some time told me I definitely donít have that. So I guess that could be a bit of paranoia.

    My previous neurologist thinks I have bppv. And like you, only did 1 15 minute exam and MRIs only on a 1.5 Tesla. My second neurologist was horrible and only did a few tests and said since my MRI was normal that I donít have MS. My current neuro I have some confidence in. He says itís at least possible to have a normal MRI although it is unlikely. He is leaving no stone unturned. I have an appointment next week with an ENT, and a 2 hour EEG. He did an MRI of my middle and lower back on a 3T machine. I currently waiting on the results for that.

    I have been doing PT for my balance and dizziness which is helping. And he thinks the problem is vestibular but not BPPV.

    So far no one has pulled the mental health card on me and they recognize my symptoms as organic but donít think they are from a single source like MS. My psychologist has been encouraging me to get more answers and even referred me to my current neuro. So I donít she she would do that if this was ďall in my headĒ.

    I should be getting some results from my doctor soon so I will keep everyone posted.

    Comment


      #32
      Just an update. The MRI of my back was normal. My neurologist has referred me to an ENT for my dizziness and he sent me to do a VNG and hearing test. Hearing is normal and Iím waiting on the results for the VNG. My neurologist found I have peripheral neuropathy of my motor nerves in my arms and legs. He definitely thinks I have an autoimmune disease and referred me to a rheumatologist. He also suggested I might have lupus. I guess only time will tell but I feel weíre at least on the right track. Will post more when I know more.

      Comment


        #33
        I'm sorry that it is taking so long to get back a dx. Limbo is an uncomfortable place to be.

        Doctors use the McDonald's criteria to diagnose MS. However, MS is an illness that is often diagnosed by exclusion. In other words, before diagnosing MS, doctors often need to rule out other illnesses.

        I was referral to a rheumatologist by Mayo clinic after a "possible Central Nervous System Lupus" dx. I saw him for over a year before my neurologist changed my dx to MS.

        Hopefully, a rheumatologist will be able to either diagnose you with something, or rule out some additional illnesses so that you'll be closer to an accurate dx. Or, like me, your MRI's may change in appearance, over time, and begin to look more like MS.

        (Check out my MS journey in small green font below my signature.)
        ~ 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


          #34
          Originally posted by Crazyguy View Post
          Just an update. The MRI of my back was normal. My neurologist has referred me to an ENT for my dizziness and he sent me to do a VNG and hearing test. Hearing is normal and Iím waiting on the results for the VNG. My neurologist found I have peripheral neuropathy of my motor nerves in my arms and legs. He definitely thinks I have an autoimmune disease and referred me to a rheumatologist. He also suggested I might have lupus. I guess only time will tell but I feel weíre at least on the right track. Will post more when I know more.
          Hi Crazyguy ~

          Thank you for the update.

          Looks like you and the doctors are keeping busy with tests!

          Good to know that you're on track to finding out what is causing your symptoms.

          Wishing you some measure (a good amount) of peace and patience while you go through this process.

          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


            #35
            So my ENT went over the results of my hearing and VNG tests. My hearing is normal and the VNG showed my vertigo and dizziness is of central origin. He said most likely the cerebellum and he is sending the results to my neurologist. My rheumatologist said and all the labs he had me do came back normal. I have an appointment next Friday with my neurologist so I guess weíll see what he says.

            Comment


              #36
              Originally posted by Crazyguy View Post
              So my ENT went over the results of my hearing and VNG tests. My hearing is normal and the VNG showed my vertigo and dizziness is of central origin. He said most likely the cerebellum and he is sending the results to my neurologist. My rheumatologist said and all the labs he had me do came back normal. I have an appointment next Friday with my neurologist so I guess weíll see what he says.
              Hi Crazyguy ~

              Thanks for the updates from your ENT and Rheumatologist appointments, and test results.

              Be sure to let us know what your neurologist has to say.

              Good luck! Hang in there!

              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


                #37
                My neurologist couldnít find anything conclusive with all of his findings. Just offered me drugs for symptom management. He says my central vertigo could be caused by drug induced Parkinsonism from some meds Iíve been taking for a while. He said it could be MS and weíll do an MRI of my brain in September since itíll be a year since that MRI was done. Or we can can do an MRI if new symptoms appear. So I guess Iím still stuck in limbo till at least September.

                Comment


                  #38
                  Originally posted by Crazyguy View Post
                  My neurologist couldnít find anything conclusive with all of his findings. Just offered me drugs for symptom management. He says my central vertigo could be caused by drug induced Parkinsonism from some meds Iíve been taking for a while. He said it could be MS and weíll do an MRI of my brain in September since itíll be a year since that MRI was done. Or we can can do an MRI if new symptoms appear. So I guess Iím still stuck in limbo till at least September.
                  Hi Crazyguy

                  Sorry to learn that you still have no conclusive explanation for your symptoms.

                  On the other hand, your neuro is still interested in a follow-up with you in a few months, so it's good to know that he's not just brushing you off.

                  Take good care of yourself, and do the best you can, in the meantime.

                  Hopefully you're able to manage most symptoms with meds, PT, exercise, therapy, etc.

                  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


                    #39
                    So Iím currently in the middle of a flare up of symptoms. Weakness, fatigue, trouble urinating. So I went to my neurologist and now heís ordering more tests. Another MRI of the brain with contrast, evoked potentials, lumbar puncture, and heís referring me to a neuro urologist.

                    Iím getting really tired of all of this without finding answers. At least weíre trying something new.

                    Comment


                      #40
                      Thanks for the update. Hopefully, a neurologist will be able to help with a diagnosis.
                      ~ 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


                        #41
                        Originally posted by Crazyguy View Post
                        So Iím currently in the middle of a flare up of symptoms. Weakness, fatigue, trouble urinating. So I went to my neurologist and now heís ordering more tests. Another MRI of the brain with contrast, evoked potentials, lumbar puncture, and heís referring me to a neuro urologist.

                        Iím getting really tired of all of this without finding answers. At least weíre trying something new.
                        Even though doctors can be very helpful in giving us results and guidance, the ďwaitingĒ times have taught me that the only person who is going to take care of me, is me. I donít need an appointment with them to eat well, get good rest, exercise when able, and try to do relaxing things when not busy with life, so that what health I have is at its best.

                        I hope that you are able to take good care of yourself in the meantime, and that your tests and progress with your doctors go well.
                        All the best, ~G

                        Comment


                          #42
                          I
                          Originally posted by gargantua View Post
                          Even though doctors can be very helpful in giving us results and guidance, the ďwaitingĒ times have taught me that the only person who is going to take care of me, is me. I donít need an appointment with them to eat well, get good rest, exercise when able, and try to do relaxing things when not busy with life, so that what health I have is at its best.

                          I hope that you are able to take good care of yourself in the meantime, and that your tests and progress with your doctors go well.

                          I have been eating better and I have noticed a big difference in my mood and symptoms. But lately Iíve been eating poorly again and in the span of a week Iím right back where I was a few months ago. Having a life with 3 young kids and a wife whose a full time student itís tough not to fall back into bad habits. Let alone have time to relax. I guess this just means I have a choice to eat quick and easy meals and feel like crap, or choose a healthier lifestyle and feel the best I can. Iím not gonna lie, being a man with an undiagnosed condition is an uncomfortable place to be. Especially since I work in a hyper masculine environment.

                          Comment


                            #43
                            Originally posted by Crazyguy View Post
                            I


                            I have been eating better and I have noticed a big difference in my mood and symptoms. But lately Iíve been eating poorly again and in the span of a week Iím right back where I was a few months ago. Having a life with 3 young kids and a wife whose a full time student itís tough not to fall back into bad habits. Let alone have time to relax. I guess this just means I have a choice to eat quick and easy meals and feel like crap, or choose a healthier lifestyle and feel the best I can. Iím not gonna lie, being a man with an undiagnosed condition is an uncomfortable place to be. Especially since I work in a hyper masculine environment.
                            Yeah I feel you on the ďno time to eat wellĒ part. I have been far from home working on the house of a relative and sleeping on a couch - definitely gets me into the convenience/comfort foods. That your diet and lifestyle influence your symptoms is definitely something to mention to your neurologist. Itís great that you recognize that and know what you need to do - even though itís not easy.
                            All the best, ~G

                            Comment


                              #44
                              Originally posted by Crazyguy View Post
                              So Iím currently in the middle of a flare up of symptoms. Weakness, fatigue, trouble urinating. So I went to my neurologist and now heís ordering more tests. Another MRI of the brain with contrast, evoked potentials, lumbar puncture, and heís referring me to a neuro urologist.

                              Iím getting really tired of all of this without finding answers. At least weíre trying something new.
                              ďHope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up.Ē -Anne Lamott

                              Hello Crazyguy

                              Keep on doing the best you can, without getting down on yourself when you miss the mark. Just 'pick yourself up, brush yourself off, and start all over again', as the old song/saying goes.

                              Hopefully you're feeling better today.

                              Good luck with your upcoming tests.

                              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


                                #45
                                Originally posted by Crazyguy View Post
                                I


                                I have been eating better and I have noticed a big difference in my mood and symptoms. But lately Iíve been eating poorly again and in the span of a week Iím right back where I was a few months ago. Having a life with 3 young kids and a wife whose a full time student itís tough not to fall back into bad habits. Let alone have time to relax. I guess this just means I have a choice to eat quick and easy meals and feel like crap, or choose a healthier lifestyle and feel the best I can. Iím not gonna lie, being a man with an undiagnosed condition is an uncomfortable place to be. Especially since I work in a hyper masculine environment.
                                Yeah; I think you hit the nail on the head.

                                If you choose to eat quick and easy meals, you'll feel bad. If you choose a healthier lifestyle, you'll feel the best you can.
                                • Avoid processed foods. Cook from scratch when you can. Raw is OK if it's easier; some meals can be nuts, seeds, raw fruits and vegetables, maybe add a cooked egg or something easy. When you cook, avoid non-stick pans and microwaves, if possible. Go back to how your grandma used to cook -- stainless steel or cast iron on the stovetop or using the oven. It's more work, but I find that I enjoy food much more. Use healthy oils to cook -- olive oil (California Ranch Extra Virgin Olive Oil) or avocado oil (has a higher smoke point; preferable for stir fries at high temps) are my first choices; not vegetable oil or canola oil.
                                • Eat lots of fruits and vegetables -- even 9 per day.
                                • Choose high quality proteins; grain-fed meats are inflammatory and not a good choice for those of us with chronic illness. Consider grass-fed meats, free-range poultry, wild-caught fish.
                                • Consider going gluten free and dairy free. Dr. Terry Wahls suggests that for an MS-friendly diet. If you eat out, you can order a burger with no bun and no cheese.

                                If it's too much to think about all of that, just take small steps in the right direction. You don't have to do it all at once.
                                ~ 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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