"TB clinic only seems set up for diagnosis of..."

My local hospital does not have a TB specialist department so I asked for a referral to Southampton. As my TB concerns are not confined to my lungs and the specialist in the TB clinic at Southampton seemed to be basing their opinions just on chest XRays I asked if the TB Clinic was the correct place for me: Via PALS I received the following information from the hospital: "We see all TB in this clinic, not just pulmonary, and so would be happy to see you for the appointment you already have if you are willing to attend.

We often have to refer on to other specialties for specific investigations for extrapulmonary TB.

- Currently, our approach will be to investigate for evidence of TB, and we would not start treatment without clear evidence of TB.

- I think the best way to proceed is for us to see you in the clinic so that we can address these issues face to face."

Recently I rang to speak to the TB Nurse who wasn't available but later they left a message on my phone saying that they didn't know why I was ringing because all my tests are 'normal'.

I have visited the Princess Anne for tests. I have had a TB urine culture which I had to wait 6 weeks for the result for and was contaminated by blue dye from a procedure I had had immediately prior to this. I pointed this out to them but they went ahead anyway and did not suggest a repeat of the test. I also pointed out that as TB can be an elusive diagnosis 3 separate samples are usually taken for the same test, but they didn't request any more samples from me. Obviously this one culture came back normal. Waiting for this test result just delayed my diagnosis by 6 weeks as it was never going to produce a true result.

I don't know if the urine sample has been noted to have been contaminated on my records or whether this just shows up as a normal result giving misleading information.

There does not seem to be any communication between the departments.

The TB clinic seem to be relying on the other departments to know what tests and how to perform them for TB outside of the lungs even though they may not be specialists in TB.

I don't want to visit the Princess Anne again; my experience there has been very distressing but I am going to visit the TB Clinic at least once to see if I can finally get a proper diagnosis somehow.

I was also disappointed that Southampton don't seem able to access my previous scans/XRays from my local hospital so they can't get the full history.

With newer medicines for other diseases making patients more susceptible to TB not necessarily in the lungs diagnosis of extrapulmonary TB is an important area and I was surprised that the TB Clinic did not immediately put in place a clear plan for investigating my concerns. Months on and I don't feel I have got very far in getting a proper diagnosis.