Announcement

Collapse
No announcement yet.

Mayo Clinic - and frustrated

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Mayo Clinic - and frustrated

    Well I've kept quiet - dunno, wierd me, didn't want to jinx anything. But we've been up at Mayo Clinic for 2 1/2 weeks. What a marathon.

    We came up here to try to figure out the myriad symptoms my husband has - the referring docs letter said "seek a unifying diagnosis".

    Nope - no diagnosis. Zillions of tests - but going home undiagnosed.

    Mayo is certainly an... interesting... experience. It's an amazing machine - I'm sure no one in the world is better at running tests. High tech tests, and lots of them. And the people who are running the tests are the nicest personnel on earth. But they do things their way, and aren't used to people who want to participate in their care or ask questions. You're told to go for a test, and not even told quite what the test is. And trying to find out is quite an adventure. You meet your primary doctor once - and generally don't ever get to speak to him again until he's sending you home. Interesting relationship.

    What did not happen though, which I'd expected, was Mayo being determined to make a diagnosis. The primary doc started off by saying they probably wouldn't. So in each specialty area, one person (maybe even a resident) took a look - said "I dunno" and on we went. Most of them did not seem disturbed by not having an explanation. Although, they generally did run a bunch of tests.

    One department did do what I thought Mayo would - have a whole pack of docs look at him, have a conference, discuss things - but the rest didn't. One hematologist really took an interest, and tried hard.

    They did find one thing - after our insistance that they look at his ears/hearing - part of my husband's balance problems are a bunch of fluid and eustachian tube dysfunction. So he now has tubes in his ears. Aaaargh - go to Mayo to put tubes in ears. What really frosts me is that I've been complaining about a finding of mastoiditis on MRI since last summer - which the doctors all blew off as not significant. Yes it was. Grr.

    They also did actually pay attention to the anemia he's had off and on for years, and the elevated inflammatory markers. No one at home has ever mentioned the anemia (although we can see it on labs) and they were somewhat unimpressed by the inflammatory markers. Mayo was interested - and says he has anemia of chronic disease, and some chronic inflammatory disease - but they don't know what. So no treatment possible. Just wait and see what happens.

    Not sure what to do from here - nothing much I guess. Wait and see.

    Sigh.

    #2
    Hi TAM, just a quick question. What symptoms does your husband have if you dont mind me asking.

    Comment


      #3
      Most of us with chronic conditions can relate to your frustration. Your experience is all too common. Our vaunted medical system has done a great job of developing advanced (and expensive) diagnostics. Now all we need is a meaningful way to use the data that in many cases seems to have been gathered without a clear medical reason. I always ask what specifically a test can reveal and how the results will be used to decide the treatment decision. Cogent answers are far too rare. Most of us have had so many tests that didn't seem to be of any use in determining our treatment. I suspect that many times the results aren't even looked at by the ordering doc unless they scream for attention.
      Foolish

      "We have met the enemy and he is us."-POGO.

      "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

      "Dream big, you might never wake up!"- Snoop Dogg

      Comment


        #4
        Originally posted by Fly_Pelican_Fly View Post
        Hi TAM, just a quick question. What symptoms does your husband have if you dont mind me asking.
        He has symptoms from head to toe. Some stuff that looks neuro, sometimes cardiac (but that's probably secondary), fatigue, anemia, pain, sometimes joint problems, etc. There is some sort of systemic illness, that can't be found at present.

        Comment


          #5
          Originally posted by Foolish Old View Post
          Most of us with chronic conditions can relate to your frustration. Your experience is all too common. Our vaunted medical system has done a great job of developing advanced (and expensive) diagnostics. Now all we need is a meaningful way to use the data that in many cases seems to have been gathered without a clear medical reason. I always ask what specifically a test can reveal and how the results will be used to decide the treatment decision. Cogent answers are far too rare. Most of us have had so many tests that didn't seem to be of any use in determining our treatment. I suspect that many times the results aren't even looked at by the ordering doc unless they scream for attention.
          I couldn't agree with you more. I've never seen so many tests in my life (over 120 blood tests alone!). But the things that were found were only because we pushed to have them investigated. Left to their own devices, even Mayo wasn't investigating the anemia.

          What we need is a really good doc to take an interest, and really look at the patterns of what has happened, what meds were involved when (because some things I am sure are due to side effects), etc. We've been able to figure out some of it, but not the root cause.

          We need Dr. House lol. Actually, a dermatologist there (of all specialties!) has taken an interest also, and listened, and who knows, maybe he'll come up with something.

          But yes, my impression was too much technology, and too little old-fashioned thought. We'll see I guess.

          Comment


            #6
            Woah, it must be very frustrating to not have a diagnosis. I feel for you guys as I know someone that is going through a spinal injury which is still yet to be diagnosed.

            Just out of interest, has you husband been tested for tropical diseases? Have you been anywhere "tropical" in the last few years?

            Comment


              #7
              Sorry about all the tests. I know what that is like. Anyone rule out Lyme Disease?
              http://arthritis.webmd.com/tc/lyme-disease-symptoms

              Comment


                #8
                Originally posted by TAM63 View Post

                We need Dr. House lol.
                It could be lupus... wait it is never lupus


                (dont mean to make fun, I hope your husband gets better.)

                Comment


                  #9
                  Wow Tam sorry your husband & you are going through this.
                  It has to be so frustrating. You'd think the Mayo clinic could figure it out.
                  I'm assuming it's not life threatening. I hope you can find peace not knowing.
                  God bless both of you.
                  sigpic

                  Comment


                    #10
                    Did they make you repeat every test done already? That's what they did to my Dad. And he was already diagnosed! That said, I think they saved his life. He refused radiation in KS, went to Mayo for all his treatments for esophageal cancer. It was a good move, they really do excel at that type of cancer.

                    It's all hit or miss, so damned frustrating. I'm on doctor strike myself but will have to cave soon.
                    Blog:
                    Does This Wheelchair Make My Ass Look Fat?

                    Comment


                      #11
                      I am so sorry that they didn't shed light on what's going on with your husband. What is your next move going to be?

                      Comment


                        #12
                        I can not imagine how frustrated you must be. It can be a nightmare trying to find someone who will listen to you and then work with you in putting together the pieces. I was very interested in your description of MAYO since they are often held up as THE place to go.
                        All I can tell you is to keep on pushing. There will be an answer at some point.
                        CKF
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                        Comment


                          #13
                          I suspect for many things Mayo is the place to go. I have never seen such thorough testing - I have never seen such technology. Nothing even close (and we've been to a major University). And I suspect if Mayo's tests are positive - they're probably awesome at fixing whatever it is.

                          They do seem to rely very very heavily on test results (which usually is good) - but imo perhaps not always sitting down and thinking so much - instead of just ordering more tests. I do confess I was disappointed in them in that way. Even there, we still did some of the thinking, and pointing things out.

                          Like everywhere else - people are people, and they vary. We found a few docs awesome, most just fine, and 1 or 2 not so great. Pretty good odds really (yep, I'm picky). I even liked the residents - and I've been known to be hard on residents elsewhere.

                          They did repeat a lot of tests. They'll read someone elses MRI etc. if it's good quality. If there's any question, the repeat things. They do not trust anyone elses interpretation, or reports of results. They want the CDs, they want the slides, etc. They seem to have repeated all the bloods - but as it had been a while, that would make sense anyway. And again - re. their excellent technology - over time, my husband had an ok echo three places in the Chicago area. Mayo's echo found an atrial septal aneurism. It's fine, he doesn't have to do anything about it - but no one else, including the university, even detected it. So Mayo repeating a test doesn't seem to be just repeating it the same - they repeat it better.

                          lol no offense re. the Lupus - we joke all the time. And they actually did look to see if it was Lupus, but doesn't appear so.

                          Lyme - well Lyme is a funny thing these days. It's actually one we wonder about. The CDC recommends particular testing sequence - Elisa, if that is positive then Western Blot. Some argue that it's possible to have sero-negative Lyme - other camps say it isn't. Complicating the situation is that if my husband got lyme, he would probably have done so abroad - and there are different strains. So yeah, he's been tested, but we are not at all confident that the Elisa would necessarily have picked it up. And those strains present different clinically, so it wouldn't look the same as Lyme here. Interestingly, Mayo was not aware of the different strains - but one doc was very interested to find that out. We'll see.

                          No tropical disease tests - but he's never been anywhere tropical ever, so that's probably not it. Good thought though.

                          I do have sympathy with Mayo and some difficulties with diagnosis, as he's had so much stuff going on, and treatments, and then side effects - for example, he had prednisone, which crunched his adrenals, thereby leading to being on hydrocortisone - so - maybe all their lovely autoimmune testing is a false negative, due to the steroids. No way to tell for sure at the moment.

                          Well, they haven't found anything life threatening anyway. There was some question of cardiac problems, and that appears to be fine, so that's good news. What looked like an awful neuro disorder was ears (aargh), so while there are still some explained neuro things, at least he can usually walk without falling over, which is an improvement. So some small steps in the right direction anyway.

                          What do to? At the moment - SLEEP! lol, it is like being in a marathon being at Mayo - you run from doctor to doctor, test to test, literally all day, at times starting at 6:30 am. Just the scheduling they manage is amazing.

                          After that - I don't know. We'll talk to the doctors we trust here of course. Try to come off hydrocortisone, and see if he has adrenals working. If so, see if any symptoms get worse. Re-test, see how inflammatory markers and anemia are doing. Other than that, not quite sure. Any bright ideas are of course welcome

                          I guess if we chose to run around some more, might try the rheumatologists at the Hospital for Special Surgery, or occult diseases at NIH (I believe there's such a thing).

                          Of course, the couple excellent and interested docs at Mayo might just come up with something - we'll see.

                          Thanks all for the support.

                          Comment


                            #14
                            Interesting - we got the final writeup from Mayo - tons of paper.

                            The doctor that trained at Mayo, who referred my husband up there asked "Did you find going there worthwhile?". He wouldn't really comment otherwise when we asked what he thought.

                            Another of my husband's docs reviewed it all - and was not impressed. He said they mostly came up with a list of items, all with "uncertain etiology" (medical-speak for "we don't know why").

                            He said he used to send a lot of patients to Mayo, and they had terrific experiencs, and got diagnoses. Over the past 3 years, he's seen more come back like my husband did - lots of tests, no diagnoses. He doesn't know what changed in the past 3 years.

                            He said he was surprised, with this case again, that they didn't seem to have made any effort to put the whole picture together. That was our impression - the specialists all did their thing, but general internal medicine didn't seem to do much.

                            I guess when I really think about it, I love a few of the docs there - but am honestly disappointed overall.

                            Comment


                              #15
                              Tam63,

                              I quickly become Hyperreflexive while typing so I will not be able to say everything that I need to say. I am fairly confident that high-impact trauma can be the etiology of MSA, including benign and non-progressive forms. I have 3 cases that I'll talk about later.

                              If your husband has MSA it would include
                              Supine Hypertension. Inactivity like waiting in the doctor's office will allow catecholimines to build up causing a Transient Ischemic Attack, seizure, posturing. Those excessive catecholimes would also make him "anxious". The Hypertension would leave evidence of infarct's and diffuse edema would be indicated by fluid build up, nasal stuffiness, excessive discharge from the tear duct and wax build up in the ear.

                              Concerning the Depo injection, nothing happened apon insertion of the needle. Nothing happened apon injection of the compound. What did happen 15 minutes after points to a reaction to the drug and MSA is notorious for drug reactions. Discontinuing a drug and seeing symptoms improve, but persist is a common complaint like your account of Lyrica.

                              I'm dizzy already so I'll come back later.

                              Joe

                              Comment

                              Working...
                              X