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Thu, Mar 14 6:06pm · Appointments and tests we don't think are necessary? in Visiting Mayo Clinic

Yes thank you we are very prepared with all the CD's of imaging and a binder full of health records. Thank you, we are so excited!

Mon, Mar 11 9:47pm · Appointments and tests we don't think are necessary? in Visiting Mayo Clinic

I think you are completely right Rosemary. I spoke to the appointment office again today who are just so incredibly helpful and I am not too worried about it anymore. I think if anyone will get to the bottom of this health mystery it will be Mayo clinic.

Sat, Mar 9 9:10pm · Appointments and tests we don't think are necessary? in Visiting Mayo Clinic

Well I just see there is a stress test appt EKG, a 24 hr holter monitor as well as a heart consult on the schedule we received so I called the appointment office and mentioned him already having just done those recently.

Sat, Mar 9 10:54am · Appointments and tests we don't think are necessary? in Visiting Mayo Clinic

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…

Wed, Mar 6 7:07pm · Undiagnosed for years and desperate in Digestive Health

Thank you for the links! I'm only part way through the first one and it has so many similarities. He is neg for C-diff.

Wed, Mar 6 3:56pm · Undiagnosed for years and desperate in Digestive Health

You are completely right about the waste of time! We are about ready to shell out the money to try Mayo clinic. With every test though there is a new hope that "this is the one" "this medication is going to work" and then you wait for the results and then get an appointment and they say no, all clear, it isn't that but let's test this and then the cycle starts all over again and poof like that is been 2 years!
He and I are certain it is not stress related. Even with being off work now for over a year and zero stress and he is really not an anxious guy as it is, is never goes away, it is constant for 10 years. It may be the same feeling as someone with anxiety but it is not tied to his emotions, it is purely physical. Also he has gone to counselling as well as tried some anti-anxiety medications and they didn't help. I can't wait until someone figures it out and it will all just make sense! Thank you

Wed, Mar 6 3:48pm · Undiagnosed for years and desperate in Digestive Health

Thank you for your reply. It sure helps to know there are other people out there that have experience the same long drawn out diagnosis stage and eventually do get a diagnosis. He is negative for celiac, has had a few tests. I don't believe his pituitary hormones have been tested, his endo I believe is of the opinion that there is nothing more than thryroid issue. No food allergies.
We are considering Mayo and he has already been offered an appointment there. I've already sent in all the paperwork and given a date, now just waiting on the estimate of cost and then to figure out where to get that money from. We are in Canada and we're close enough to make the drive to Rochester. I'm just so afraid that they won't find the cause and then what is left?

Tue, Mar 5 8:45am · Undiagnosed for years and desperate in Digestive Health

Thank you. If I really think about it, it's honestly shocking that this is still our reality right now. I just try not to think about it too hard and neither does he I don't think because it's pretty discouraging.