1. < Infectious Diseases

Diagonised with tuberculosis in the gut and the struggle is never end

Posted by mayoclinicseeker @mayoclinicseeker, Dec 13, 2016

I was having night sweats continuous fevers and lot of lower abdominal pains. i went from post to pillar here in USA none of the doctors were able to diagnose as this is not very prevalent here. Nothing worked out all this went on for 5 months and at last i had to go to India there i was diagnosed in a day. I thought my agony ended and got the medicine and started back working here in USA after 3 months of treatment in India. Now again i have been having night sweats lot of pain and totally uncomfortable. The journey of running post to pillar has started, none of the doctors own up the case infectious disease doctor says i should see a GI and GI says i should see a gynac. I think i should book my tickets again to India all this has been going on from 2 months. Does anyone have this disease who can guide me on the doctors to approach , what to eat and what to expect. Kindly friends please save my life by sharing your story. Thanks

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Katherine, Alumni Mentor | @katemn | Dec 16, 2016
In reply to @mayoclinicseeker "I just called Mayoclinic minnesota but here is the catch they want my primary care doctor..." + (show)
@mayoclinicseeker

I just called Mayoclinic minnesota but here is the catch they want my primary care doctor to send them the reports and my primary care doctor did not even give a proper report to my short term dissability. I have asked him to refer many time but he does nothing i cant depend on anyone else. Can my dear friends tell me a way out to reach out to infectious diseases doctors in MayoClinic. Anticipating your reply. Thanks

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Pavitra, I have sent you a Private Message! Katherine

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Katherine, Alumni Mentor | @katemn | Dec 16, 2016
In reply to @mayoclinicseeker "@katemn: I do have a first name and all of you can call me Puffs or..." + (show)
@mayoclinicseeker

@katemn: I do have a first name and all of you can call me Puffs or Pavitra. I know it feels good to be called by our name.

Today i went to a GI practioner she did not own up my case she rather advised i should go to India as they have seen this disease better there than here :(. I had high regard for doctors untill i faced this issue. No offence to genuine ones but most of them are treating us like their business units which unit can make more money).

List of my worries:

I trust Mayo clinic but how do i know which of the 3 is better for my case
How easily they are reachable as this needs close monitoring and reassurance
How easy it is to schedule and cancel appointments
i dont have lung issue and tb is in my tummy, most of the doctors have seen it in lungs can i find someone who will treat it in tummy
If i need to undergo invasive treatment and if i should be hospitalised there how do i manage without my family as i told you earlier i stay alone here
Can anyone share their experience at mayo clinic who have had surgery

Thanks for all the advise. Big Hug to all brave people here. One more challenge to me is i dont drive so probably i may have to take a bus or hire a cab. Here its very difficult without driving. I am worried as to how much all this may cost. But i am surely going to call those folks and once again my besties thanks for keeping up my spirit

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Pavitra, be sure to keep us posted on your progress. You can fly right into Rochester MN then can rent a hotel room that is walking distance from Mayo Clinic. You can google all these things. I have stayed in hotels in Rochester .. not fancy but close by. You will not need a car. Let us know how you are doing after your Mayo Clinic phone calls! Hugs! Katherine

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mayoclinicseeker | @mayoclinicseeker | Dec 16, 2016

Hi All,

I am moving out from this place and moving to a new town. Taken opinions from almost all doctors here 1 infectious diseases doctor, 2 GI's, 1 primary care, not feeling great my friends have not been hearing anything encouraging. Hope dark tunnels always lead to bright ends. I will keep you posted on whats happening. Last week has been a painful week lots of pain and intermittent bleedings . Taking life as it comes and i will fight it back. i will fight it back. This is mantra i have been saying and hope to live by it. New town, new people, new doctors and loads of holiday doesnt look very promosing, but you know what all your posts and messages make me wait for a new day and make me more positive. Iam sure to win my way :).
Hope new place will bring in peace. Luv you all and tight hugs. Take care.

Regards
Mayoclinicseeker

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Katherine, Alumni Mentor | @katemn | Dec 16, 2016

Pavitra, please do keep us posted .. what a tough time you are having .. you are in our thoughts! Hugs to you! Katherine

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mayoclinicseeker | @mayoclinicseeker | Dec 16, 2016

Anybody knows any doctors in Nashville (Fraklin) Tennassye please help me with their names even primary care but good one is ok.

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mayoclinicseeker | @mayoclinicseeker | Dec 16, 2016

Thanks Katherine. Your encouraging words makes my life livable !

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Katherine, Alumni Mentor | @katemn | Dec 17, 2016

@mayoclinicseeker, HELP! Can anyone jump in and help Pavitra with any names or information .. please help if you can. Call a friend or family member in Tennessee and see if they can help? Thanks to all .. that is why we ARE a caring community! Hugs to all! Katherine

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mayoclinicseeker | @mayoclinicseeker | Dec 18, 2016

I think its easy to land on moon than get a doctor's appointment. Vanderbilt hospital is giving me an appointment on March 20th 2017 for primary care doctor and i cant see infectious disease doctor without referral from primary care. Since i am moving none of the doctors here know anyone in Fraklin and no reference. Cant we as a forum do something about this. When do we need doctors when we are sick not when doctor is available. When doctors can see everyone in a heavily populated country why does it take so much time for the doctors to see a patient here. The time spent per patient is hardly 10 mins . I am disappointed. I think healthcare is basic human right and its not even the point that we are asking help, Everytime i need doctors appointment i am asked to go to emergency is it fair to ask me to go to emergency, My infectious disease doctor asked me to get my MRI done and her appointment is not available till Jan 13th. I dont see them comeup with any solution but they really push us to our edge. I even reached out to public health office but they cant do anything too. Apologies i dont know whom to share my furstration and concern with other than my forum friends. I sincerely apologies. Never felt so helpless and never cried so much in my entire life. Friends i am breaking down. Request you all to pray i find someone who will address my concerns.
Coming to symptoms, Night sweats have not stopped. No fever but the lower abdominal pain is continuous and i have taken a painkiller as i need to travel tonight. Take care. You guys are my ray of hope ! big hug and lots of love. Happy weekend !

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1 reply
Katherine, Alumni Mentor | @katemn | Dec 18, 2016

@mayoclinicseeker .. Pavitra, I SO TOTALLY hear your frustration! The medical cost in the USA are some of the highest in the WORLD .. yet some of the most inefficient. I won't even go into my experience in Geneva with my pneumonia with a total cost of I think about 100 Euro for a chest Xray .. discussions .. billing payment etc .. ALL done within ONE HOUR!! THAT is why one reason why our medical costs are CRAZY .. people who can't get appointments get SO sick that are REQUIRED to go to the Emergency Rooms at THAT crazy cost! Our whole system is out of whack . . and I don't have the answer for you or for me.. I can only say how sorry I am this is happening to you.

When you call Wendy on Monday tell her you are from India and it is easier to express yourself in an email than by phone .. could you email her with your symptoms? If she agrees email her some of the things you have told us on the Forum .. MAYBE that will help. Don't give up. I hate to see you have to travel back to India to get medical care. Doesn't say much about the USA medical system! Hugs to you! Katherine

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2 replies
falconfly | @falconfly | Dec 18, 2016
In reply to @mayoclinicseeker "I think its easy to land on moon than get a doctor's appointment. Vanderbilt hospital is..." + (show)
@mayoclinicseeker

I think its easy to land on moon than get a doctor's appointment. Vanderbilt hospital is giving me an appointment on March 20th 2017 for primary care doctor and i cant see infectious disease doctor without referral from primary care. Since i am moving none of the doctors here know anyone in Fraklin and no reference. Cant we as a forum do something about this. When do we need doctors when we are sick not when doctor is available. When doctors can see everyone in a heavily populated country why does it take so much time for the doctors to see a patient here. The time spent per patient is hardly 10 mins . I am disappointed. I think healthcare is basic human right and its not even the point that we are asking help, Everytime i need doctors appointment i am asked to go to emergency is it fair to ask me to go to emergency, My infectious disease doctor asked me to get my MRI done and her appointment is not available till Jan 13th. I dont see them comeup with any solution but they really push us to our edge. I even reached out to public health office but they cant do anything too. Apologies i dont know whom to share my furstration and concern with other than my forum friends. I sincerely apologies. Never felt so helpless and never cried so much in my entire life. Friends i am breaking down. Request you all to pray i find someone who will address my concerns.
Coming to symptoms, Night sweats have not stopped. No fever but the lower abdominal pain is continuous and i have taken a painkiller as i need to travel tonight. Take care. You guys are my ray of hope ! big hug and lots of love. Happy weekend !

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It's the same on the west coast. I thought I was having heart trouble and I couldn't get in to see my heart doctor..had to go to the emergency room...what good are they if you can't see them when you need them. Our emergency room nor our town have a heart doctor. I had to wait a month to see one who came to a town from another area. It is so frustrating. I have learned that I must hope my general doctor knows what is going on and then you can't see him for several days or up to a week either. So I hear you. Know you are not alone.

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