Has anyone been diagnosed with Abdominal TB or ly... - TB Alert

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Has anyone been diagnosed with Abdominal TB or lymph node?

snow22 profile image
13 Replies

Abdominal TB. Could anyone share their experience of Extra pulmonary TB diagnoses?

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snow22
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hottchoc profile image
hottchoc

What do you mean when you say you did your blood test?

snow22 profile image
snow22 in reply to hottchoc

I mean NHS would not do it, so I paid for my own Quantiferon Gold Test. NHS do not want to do anything!

hottchoc profile image
hottchoc in reply to snow22

The problem with a TB blood test is that if you have ever been exposed then your blood test will always be positive.

However, something isn’t right with you as you have evidence if that, although it may not be TB your symptoms do need investigation. It may be worth speaking to another GP to get a second opinion. But this time take along a list of your questions and symptoms on how you are. They are obliged to see you and get you sorted - good luck

snow22 profile image
snow22 in reply to hottchoc

Thank you

hottchoc profile image
hottchoc in reply to snow22

You need to make an appointment with someone to get more definitive answers

snow22 profile image
snow22 in reply to hottchoc

TB clinic will not see me

hottchoc profile image
hottchoc in reply to snow22

Start with your GP, he will have the power to refer you if needed, and take along your questions and ask for answers

snow22 profile image
snow22 in reply to hottchoc

They stoped my online access to records

hottchoc profile image
hottchoc in reply to snow22

Unfortunately discharging yourself doesn’t respect a doctors decision to treat you properly. It is very frustrating to not get answers or what you want and when, but there needs to be respect on both sides. Be calm and just let them know how you are feeling and say how worried you are.

snow22 profile image
snow22 in reply to hottchoc

I had to go private to get scan and blood test. They never listened.

hottchoc profile image
hottchoc in reply to snow22

Like I say, please stay calm when you speak to your GP tonight, and take the focus off TB for the moment and concentrate on your worries with the CT results swelling etc. Try not to have a dispute with them because they need to know you are listening, and then equally they will listen to you and your concerns, giving you a way forward - good luck but please manage your stress

snow22 profile image
snow22 in reply to hottchoc

it has been going on for over a year and a half, and it has been a fight all the way to get this far

Doossa profile image
Doossa in reply to snow22

Hello

I hope this will be of help. I just completed my six months treatment for abdominal TB, but I was not clinically diagnosed, I was treated for empirical due to my symptoms of night sweat weight loss ( 8kg)and and chills

I was treated for pulmonary TB in 1996 for six mo thx and got the all clear. 5 years ago I had colonoscopy and went for the follow up on Feb of this year. Some biopsies was taken and due to lesions in the ileum area.

Then in March I started having stomach pain and was referred for gastroenterologist who due to my symptoms referred me to the TB clinic.

It was the height of the pandemic and they started me on voractiv for two months for my TB and steroids for my IBD in May

It was a a hard journey and my wife, TB team and IBD team supported me throughout

I stopped my steroids after 1 month and was placed on rifinah for 4 months after taken voractiv for 2 months and pyrodixine B6 to prevent neuropathy cause of rifampicin

I experienced many side effects like pain, flu like symptoms , and mostly fatigue

I am adjusting to life without those toxic medication after six months of ups and down

No more symptoms apart from occasional excessive sweats and I gained back 9kg

So to answer your question, they treated me empirically without any diagnoses

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