No Diagnosis

[Janey5148]

Hi, i've been having investigations since July last year after having what I thought was a straight forward chest infection. It never cleared up and after months of tests and hospitalizations I am now going to the Brompton for my results next week. I've been told I have an abnormal Trachea and they were considering Polychondritis but I am struggling to get them to rule out many of the tests they have taken. I have been past between several teams and tested for things like TB on several occassions. My question is, is this standard procedure, I would have thought it would have been easier to diagnose than this?

[jenss]

Hi Janey, unfortunately lung diseases are very complicated and there are many of them. Sometimes it is not straightforward to differentiate between them and it can take months and more months or even years for a diagnosis to be made. Sometimes drs want to monitor for signs of progression before committing to diagnosis and treatment. In the long run though it is better to get the correct diagnosis at the start rather than mistreating and then re-diagnosing later on. Hopefully, you will get answers and advice on treatment at your upcoming appointment. The Brompton is certainly a top hospital for lung diseases with expert drs and excellent facilities. Be sure to ask questions if something is unclear; also, if you can take someone with you that would be helpful as two people often hear/understand more than one (who also is the patient). I hope it will be good news for you, but please let us know how you go. Best wishesxxx

[sassy59]

Great reply from jenss.

You take care and hope you get a diagnosis soon. Xxx

[clare86]

Relapsing Polychondritis is an extremely rare condition that only 3 per million people have. I am one of those. It can take 2 years or more to diagnose as there is no 1 specific test to confirm diagnosis. I saw so many different consultants and was eventually referred to a specialist lung hospital, and still it took them a long time to diagnose it. Good luck with you results and any further testing.

[Janey5148]

Thank you people, just seems to be two steps forward 3 steps back, need to be more patient! I have definitely spent too much time researching myself which is always dangerous. Just want to know so that I can begin any battle ahead being in.limbo is frustrating. Thanks for your replies always helps that people understand x