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    mayo clinic?

    I can't seem to get the right doctors or the right tests, has anyone been to the Mayo Clinic, and do they do a thorough job at trying to find out what exactly is going on? Thanks Char

    #2
    Mayo Clinic Rocks!!

    Hi - I went to Mayo Clinic Scottsdale (I live in So Cal) on 9/13/11 after almost 2 yrs of trying to treat what was happening with my leg/foot drop with an ortho doc who even referred me to a local neuro in Jan this year, no tests were ordered at all...

    1st consult at Mayo was almost 3 hrs long, 1 1/2 with resident, and 1 1/2 with both her and the med dir of neurology. then they ordered every test they could and started immediately. In 2 days I had full blood work up, MRI of brain w w/o contrast, mri of cervical and thoracic spine, emg, vep, sep, lung xray, etc. They had all the results back by Friday (consult was on Wed) and I finally had my diagnosis...PPMS.

    They are extremely efficient, caring, thorough. I did have to have the dept accept my case 1st though...sent in all tests/MRI (lumbar) and history first, but they accepted me in 1 day.

    Call ahead to discuss with them why you want to go, they will register to you in their system.

    Good luck!!
    Prob MS 9-14-04; Dx PPMS 9-16-11; RRMS 12-15-11
    Ampyra 10mg 2xday
    Copaxone 1/20/12

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      #3
      Hi big shooter:
      The Mayo Clinic is globally recognized for its medical excellence. That reputation didn't come from not being thorough. That doesn't mean that every doctor, every workup and every diagnosis are always excellent, but the clinic's vast experience and resources increase your odds of getting to the bottom of whatever's going on with you.

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        #4
        Thanks so much, this seems like the best option for me... I need someone that knows what they're doing!

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          #5
          People fly in from all over the world to the one in Rochester. They are very thorough, as a general rule, and the research that Mayo Drs. are known for is top notch!
          Lord, keep your arm around my shoulder and your hand over my mouth. Unknown

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            #6
            I may get hate mail for this, but I went to the one in Rochester this past June and it was horrible. I already was diagnosed at the time with a definite case of MS, NOT Clinically Isolated Syndrome. Definite, confirmed by several neurologists and specialists, multiple sclerosis.

            I brought all of my past MRIs and my neurologist's records for the past few years with me. After going over my long detailed history with one doctor, another doctor comes in and after spending 6 months waiting to get in and another 4 hours on the doctors, he told me the oh so cliche "but you look fine," and to come back when I can no longer hop on one foot. I understand he sees the very bad cases of MS and I have been very lucky thus far with mine, but he was extremely narrow minded and thinks you only have it if you can't walk/move.

            I was also told I have this "MS" because of the new diagnostic criteria. He also looked at his watch while my mother was asking him questions and said "Last one, I have other patients." (Mind you, he had been in the room for 15 minutes). When we received the bill they charged us $350 extra because he was running so late (and this was I guess my fault) so I had to pay for extra time.

            I realize others have great experiences, I just wanted you to know mine. Do not be disappointed if you don't have an incredible appointment. After all, my infusion nurse did point out that although they ARE Mayo Clinic, they do NOT specialize in MS.
            "My grace is sufficient for you, for my power
            is made perfect in weakness." -2 Cor. 12:9

            dx 11.23.10 RRMS

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              #7
              Yikes, I'm going in November

              Kelsey.23, you don't deserve hate mail for stating your case. But since I'm going to the Mayo Clinic in Rochester in November, I'm kind of concerned. I thought they actually had a specific MS Clinic there, but I could be wrong. Hope I have a better experience.

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                #8
                For some reason I thought they were the center that didn't advocate one of the dmd meds for new diagnoses of MS but instead took the "wait and see approach".
                He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                Anonymous

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                  #9
                  At Rochester, Mayo has a Neurology Clinic with a number of neurologists who specialize in MS, though I do not think they call it "an MS Center."

                  I went to Mayo for a brain tumor but did not see the MS specialists when I was there. My neuro-oncology and neurosurgical care was top notch, with efficient testing and scheduling, plus doctors who talk to each other instead of me being some go-between amongst various medical specialists in my home town/state who didn't talk to each other.

                  The doctors spent as much time with me as I needed. When I first called to find out how to get an appointment at Mayo, I got a call the next morning from the right neurosurgeon, who was willing to see me right away (as soon as I could fly to Minnesota from Seattle), but we agreed that given we both had busy schedules, two weeks later would be fine.

                  Though I didn't go to Mayo for MS care, since I wasn't having trouble with the care in my home state, I was very impressed with the high quality of care I received from neurosurgery, neuro-oncology, seizure specialist, and the internal medicine docs who also took care of me before and after my brain surgery.

                  Evidently, at least one person can have a bad experience, but I thought the whole place was great!

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                    #10
                    Deescee, don't be stressed about it that was just how mine went, not how everyone's experience goes! And I was on the floor with neurology specialists and was given a doctor who specializes with demyelinating diseases, NMO, and the natural history of MS. I truly hope your appointment goes much better and you get a lot of information during your visit. Please let me know how it goes!

                    Jules A, you are right. I was told by this doctor to stop my Copaxone at the time and wait it out, (I had even just gone up a notch and my neuro wanted me on Tysabri) but I am not the type to sit back and let it my MS progress on its own when I am blessed enough to have medicine to slow progression.

                    Onlyairfare, I am glad you had such a great experience while you were there.

                    I'm sure most people have great experiences, but like I said I was just sharing mine for anyone interested!
                    "My grace is sufficient for you, for my power
                    is made perfect in weakness." -2 Cor. 12:9

                    dx 11.23.10 RRMS

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