My husband has been ill for 10+ years now and is still undiagnosed. Well he has 2 diagnosis but even with treatment for those he is still sick and getting worse so we believe there is still an underlying issue yet to be found. His symptoms started as GI only but now more recently affect several different body systems (and really they may be completely separate issues not related at all!) and he has had tons of testing already and most being very recently. We have taken the plunge and got an appointment however I am concerned because most of the appointments booked so far look to be heart related and only one GI related way far out (we are on the wait lists for the GI to move it closer).
So my first question would be can I call whoever is deciding the appointments and ask to not have any heart related appointments? His heart has been checked extensively out here in Canada and appears to be fine. It looks like his bradycardia is simply a side effect of his hypothyroidism. We do not have unlimited funds and our main reason for wanting to visit Mayo is his unrelenting abdominal pain. In the write up for why we wanted to visit mayo we mentioned all the other symptoms including the slow heart beat in case they are related but it is really just the GI pain that we need figured out.
My second question is: I also see on the list of appointments several we just had done in December (EKG and 24 hour holter monitor). I did already ask about those and mentioned they were just recently done and we will be bringing the paperwork regarding those with us and the lady (who is very kind and helpful I may add) said if the Internal Medicine Doctor does not think those are needed they may be cancelled and it is easier to cancel them than to add them in later. My concern is they are on the first day we arrive so are they really going to cancel those so short notice? Again this has to do with my first question above I suppose and us not really being concerned about heart problems.
Third and final question (for now!): We had some testing done recently from Germany for infectious diseases and a couple things came up. None of that was sent to Mayo as we only just did it. We feel that it may warrant an appointment with an Infectious Disease Doctor. Should I mention that to the person booking the appointments? I would hate to get out there and then not even be able to get an appointment where we need. I'm not sure which specialties are the hardest to book into.
I'm worried I wasn't clear in what we were hoping to accomplish.
I am probably over thinking the whole thing…
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