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

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

Colleen Young, Connect Director | @colleenyoung | Jan 24, 2017

In reply to @mayoclinicseeker "Dear Katherine, I have enrolled into mayclinic and filled in all the forms asked to fill..." + (show)

Thanks for tagging me Katherine.

@mayoclinicseeker I invite you to the Digestive Health group http://mayocl.in/292wLFY. @kanaazpereira is the moderator of Digestive Health and can help connect you with other people to discuss intestinal stenosis and abdominal wall thickening.

mayoclinicseeker | @mayoclinicseeker | Jun 6, 2017

In reply to @mayoclinicseeker "Dear Katherine, I have enrolled into mayclinic and filled in all the forms asked to fill..." + (show)

Hi dear,

Did you hear anything from Katherine about intestinal steniosis. It's painful n my symptoms are not reducing . Need your support my dear soul sis. Tight hugs. Missed you all from a while. Thanks.

Katherine, Alumni Mentor | @katemn | Jun 6, 2017

Dear @mayoclinicseeker, so sorry to hear about your pain .. I really do send you many hugs .. BUT I know ZERO about intestinal steniosis. I REALLY do encourage you to seek out the resources stated above by Colleen .. there you will find people who truly know what you are going through .. Katherine:

Colleen said: @mayoclinicseeker I invite you to the Digestive Health group http://mayocl.in/292wLFY. @kanaazpereira is the moderator of Digestive Health and can help connect you with other people to discuss intestinal stenosis and abdominal wall thickening.

mayoclinicseeker | @mayoclinicseeker | Jun 8, 2017

Hi all

Any update on steniosis anyone aware of it. Like to know the dos and donts. Thanks a lot in advance.

baunch | @baunch | Apr 4 7:07am

In reply to @katemn "Hello MayoClinicSeeker, Welcome to Mayo Clinic Connect! You have found an excellent source of information and..." + (show)

@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

Jump to this post

I am waiting for biopsy results
Also dealing w Sporotichosis

View More View Less

Please sign in or register to post a reply.