← Return to Diagonised with tuberculosis in the gut and the struggle is never end

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@katemn

Hello MayoClinicSeeker, Welcome to Mayo Clinic Connect! You have found an excellent source of information and support. I myself know ZERO about the VERY real symptoms you are experiencing .. but I know a LOT about dealing with doctors and medical issues in general! Might I suggest you take a look at my particular Mayo Clinic Connect Forum that deals with a type of Non Tubercular lung issues .. frankly MANY of the members on our Forum have been MISDIAGNOSED and UNTIL they become advocated for themselves .. EDUCATE themselves .. due their OWN "Due Diligence" .. they do NOT get the proper medical attention! Sorry but this has been the truth.

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=18#post-243182

On this particular Forum you WILL learn how to advocate for yourself .. how to put together a game plan .. now NOT to be pressured into ANYTHING because you have educated YOURSELF! Once on our Forum all of us will try to help you further. Read a few pages of our Mayo Clinic Connect .. after you have done so .. post a few questions .. then we will all try to help you further. We will be there for you on this journey as far as we can despite the fact we have NOT had your particular symptom nor been to India".

One thing I WOULD say is PLEASE do NOT get a ticket back to India!! I BEG of you to call Mayo Clinic in Minnesota 507-538-3270 7 a.m. to 6 p.m. Central time, Monday through Friday! Tell them what you have told us .. THEN book a flight to Minneapolis (MSP) and get here ASAP! How do I know?? I had a rare lung disease (Mycobacterium Avium Intracellular Complex) that I was blessed to find an EXPERT who speaks Internationally on MY lung disease! Mayo Clinic in Rochester MN is "Mecca" as far as I am concerned! People fly here from all over the world/USA to consult with the doctors here. The blessing is that they work as a "team" .. you get the brains of a team of doctors who consult with each other .. NOT just ONE doctor! It is your hands .. but if I was sitting in your shoes .. I'd make that phone call and get those plane tickets! You will rent a car and drive from the Airport to Rochester .. rent a hotel room and you are on GO! DO IT! You do NOT need to go to India to get the best care .. it is right here under your nose! Sending you a hug! Katherine

Good Luck MayoClinicSeeker, hope the above helps you just a little. I know this is a really tough time for you .. sending you a Hug! Katherine

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Replies to "Hello MayoClinicSeeker, Welcome to Mayo Clinic Connect! You have found an excellent source of information and..."

Thank you everyone need every bit of information and all the hugs. i forgot to tell i have a condition called wanting all the hug condition đŸ™‚

Mayoseeker .. do you have a first name .. makes it so much more personal! What a GREAT response! Loved it! Sending you yet ANOTHER Big Hug! Katherine