TB in other parts of the body other than the lungs.

[nat-]

Just to let people know that TB can occur in other parts of the body. I had TB of the kidneys and its my misson to help educate medical workers and general public on this as it took years to diagnose me. TB can affect lots of body parts and im now a member of TBAG (TB ACTION GROUP). I was wondering if other people who have or had TB in other parts can tell me in ordar to help others who are going into treatment.

[FranklinPercival]

Lymph node in right armpit.

[nat-]

Iv have heard of that and met someone who had that. did it take long to diagnose?? My TB nurse told me that getting TB in the lymph node is the second common place to get TB after the lungs. I found it really hard to get diagnosed and it took years and i was in and out of hospital, i was also pregnant twice whilst having TB. I do hope you find your treatment ok is your still having treatment, i was on treatment for 6 months.

[FranklinPercival in reply to nat-]

Your nurse was right, Lymphatic TB is pretty common about as fifth a common as pulmonary. You, nat-, are extremely unfortunate in that genito-urinary tract TB infection occurs at the rate of one case in half a million of the population (UK 2009 figures).

Diagnosis is a sod if you haven't got TB on the lungs since most medical professionals, never mind the public, think "TB = Lungs", and then stop thinking altogether. The diagnosis I was finally given after years of complaint and presentation was of Hodgkin's Disease with non-Hodgkin's Lymphoma as an alternative. Both of these bundled together are about six times as common as Tubercular Lymphadenitis, but it would have seemed to me to be good practice to consider a differential diagnosis. Had I not been insistent on a core biopsy they were proposing to remove my right lymphatic system.

As for your kidneys, did no anomalies show up on ultra-sound scans during either of your pregnancies? How did you finally get given a diagnosis? Was it culture confirmed? Mine wasn't, but only just over half are.

I found the six month treatment OK, but I wasn't given Ethambutol. I don't think it worked and said as much within three months of its end, ten years ago last June.

I think that the reasoning behind lack of interest in extra-pulmonary cases without pulmonary involvement is that we are not infectious.

May we know more of your story, please?

[nat- in reply to FranklinPercival]

Well, it was a sod getting diagnosed! I has so many tests done and was told many different things. I was rushed to hospital with my first child as the doctor thought it was my appendix, i was in for over a week and had scans done but nothing was found so i got sent home. After this i was back to the doctors alot with same problems and was always sent home with antibioctics without my urine being tested! Then with my second child i was in so much more pain and in the end i was unable to walk. Again i was in and out of hospital after having him, then when my second boy was 6 months old i was so fed up and went back to doctors telling them i know something is wrong so i want tests done. In the end my nurse practioner realised i could not go on like this and did lots and lots of tests. All tests came back clear, this was good as she said it could be cancer and lots of other stuff. She then told me to leave it with her and she would look into what else it could be, after looking she found out that you could get TB in the kidneys and decided to test me for this. I was told as i was young, white and born in UK plus i'd had my BCG at school it was very unlikly i would have it! After sending in urine samples for a week and waiting weeks for results to come back that i did infact have TB in the kidneys and it was culture confirmed. She did not know where to send me for treatment as she has never diagnosed anyone with TB before so she had to ring the hospital to find out!

I found it amazing that medial workers dont know you can get TB in other parts of the body, as this leds to people like us suffering.

I found treatment hard, and i got ill with all my medication and got lots of side affects. I found it more mentally challenging and had to work really hard every day to take all my tablets. This was one of the hardest parts of having TB for me. I do hope others who are having treatment are doing well and staying strong.

I agree with you and feel that TB outside the lungs is seen as less inportant due to the fact it's non- infectious.

I find your story shocking, but unfortunately i have heard many storys off many people who have had bad times with being diagnosed. This is why i feel the need to educate people on TB and why i love being involed with TBAG (TB action group).

[FranklinPercival in reply to nat-]

Hi, Natalie,

Thanks for your informative reply. I had thought to ask about urine testing, but wasn't sure whether it would be polite to ask! Going back to ultrasound however, were any structures visible in found your kidney scans are you aware?

Your nurse practitioner sounds to be a pearl beyond price, in that she recognised the limitations of her knowledge and did some research – keep hold of him/her. Life would be a lot easier for everyone if we didn't have to chase round checking up to ensure that others know what they're doing. Three years ago I took a woman I was caring for at the time to see her GP with a discharge (she had been amenorrhoeic for a year); the doctor asked for a specimen which she produced, told us to ring back in a week for the result. I rang back to be told that it was all clear. The conversation went roughly like this:

F. What do you mean, 'all clear'?

N. She isn't pregnant.

F. Since she is not producing luteinising hormone nobody had supposed that she might be, what of the culture?

N. What culture?

F. The culture that the specimen should have given rise to at the path. lab.

N. Oh, I thought it was just to be tested 'in-house' for pregnancy.

F. Not what I heard the doctor say to the girl he gave the specimen to.

N. That was me, perhaps she'd better make another appointment.

In this case the thinking seems to have been, 'There's a plump girl, this is her specimen, therefore I must test it for pregnancy'.

[nat-]

Im so used to talking about my urine!! so i dont mind!!

About my scans i was not made awere of anything as noone seemed to want to tell me. All i know is when i was pregnant (twice) i had fluid around them and when i was finally diagnosed with TB i know scares were found on them, but iv not been told anything else! Its seems to me like you never get told much unless you ask but when you do ask you get a quick reply!

I am very lucky to have a nurse who understood that i had something wrong and i knew my own body. I was so happy to find out i did have something wrong as before i thought i was going abit crazy!

As for the conversation.......it says alot! It seems to me some people who work in healthcare dont seem to know what to do!! I hope with the work TBAG do and TB Alert do that health workers will be more informed about TB!

[Tom-G]

It is unusual to get TB these days but it’s even more unusual to get TB pericarditis. I was treated when I was 19 for this and I thought my number was up. I was in hospital for 5 weeks and off work for 5 months. I was probably lucky and unlucky in equal measures. I did not get a BCG at school, so I only have myself to blame for that.

Unlike the more slow-moving pulmonary TB, TB pericarditis comes on very quickly and I found myself in hospital only after a week or so of the first symptoms of heart problems. The diagnosis was pericarditis and a pleural effusion, but no-one knew what was causing it. Initially I was treated with penicillin but after a week it became obvious that it wasn’t going to work. By this time things were critical, my heart was packing in, my weight went down to 6 and a half stones, and I wasn’t eating. I could hardly move far less get up.

One day my doctor said “we think you have TB”. I couldn’t believe it, but they started the anti-TB treatment that day. The difference within only a few days was miraculous. I started eating again, I was able to get up and even take a shower by myself, I was able to go to the X-ray unit instead of getting X-rays in bed, and generally started to get better, albeit slowly.

In five week I was out of hospital. I was told that they wanted to keep me in for a little longer but I was desperate to get home to my own bed, get some home cooking and some peace and quiet. Although I was wobbly for a few months I managed to get back to my job after 5 months in total of being off work.

My follow-up hospital appointments did confirm pleural thickening and a scar on my left lung, but I managed to escape major damage due to the prompt action of my doctors. TB pericarditis can become constrictive and once this has happened the prognosis is more serious and surgery then becomes and option. According to at least one website the fatality rate is 20 to 40% for tuberculous pericarditis depending on where you get treated. Luckily I managed to escape all that.

[nat-]

hi Tom-G,

im really glad you got better and had good doctors to help you. Iv never heard of pericarditis TB so i cant really say much about it. But thank you very much for sharing your story as it m,ay help others who have TB. Sounds like you was very ill but your story shows that your doctors worked it out quick and you got started on treatment.

[Utra]

I had fibroadenoma from 2011 and recently in 2017dec.. I found lumps developing in my armpit.. And was given antibiotics.. Which didnt work and later my fnac results showed early diagnosis of tb.. Post which i was under ATT for 3 months .. Lumps size didnt decrease.. And before a month.. I had 3 lumps taken out frm my left arm pit... And now i have been taking R cinex for a month..

But i find lymph nodes lumps developimg on both sides of my rib cages... I feel like it is spreading all over my body .. I am not sure if the tablets are working.. Will this spread more rapidly.. I dont think i would recover..

[Hidden]

It took me 6 years to discover that TB can evolve late in life and can resurface umpteen times over decades depending on the immune systems strength. Research states that when Tb is 'obtained' it is for life! Doctors hate those who dare to ask them questions that they do not have a clue about. that means most internet users who have a basic questioning education i.e. = not thick.

My aunt a school mistress told me reading is the key to knowledge. That was when I was ten now it is the internet which is the key to knowledge and doctors know it but hate it......... How dare some patients know more than them about themselves? One old lady told me ====look I know what's going on in this skin of mine because I've had 83 years to get to know it.... She added some doctors just do not listen to what you are telling them! Many doctors do not want to know re Tb because many or even most seem to have the idea that TB is history.... My lad says dad you are off their radar.

Knowing what is happening is worrying. In Nottingham anyone who is latent TB positive still has to have a referral to see a TB specialist. All the doctors I have met do not have any experience with TB nor do they look at previous medical history which seems ridiculous if that history contains factors of TB.

One fact that needs National alteration is that instead of very few Cities having self referral for TB all Cities must have a self referral Tuberculosis system.... Is it any wonder TB is on the increase in the UK? Doctors are not aware as they should be to care for the health of the country as a whole regarding TB. This is despite NICE recommending certain procedures re TB. Advice that is altered for the better year on year but still TB infection increases......... It is simply not on is it?

[Hidden]

A urologist I was seeing kept harping on about me having a cystoscopy to eliminate the possibility of me having bladder cancer! When I had got rid of the nasty feelings in my bladder after a course of antibiotics I went for the test because I felt physically OK.

I was glad to hear that my bladder mucosa was normal...... The doctor sat down with me and I said I hope you don't mind me asking if youv'e got just a minute but as a kid I had TB

which I was resistant to....... notice was! I said where in the body can TB infect? He replied it can get absolutely anywhere!

This important because he was the only one who was aware of that fact re TB because 26 doctors did not know what he did. Although this other fact may well seem ridiculous but did you know that very few doctors observe ancient or not so ancient medical history notes? This is especially true of paper notes. The head of medical management at our surgery told me that it's difficult for the doctors to look into paper notes particularly.

That is why 2016 a senior nurse told me that hopefully this year all records will be transferred to electronic data but what about those doctors who can't be bothered as of now........ I wonder if the warning system will ring a bell if TB has been an issue or better a sharp electric shock in the doctors kiber?

[Hidden]

I asked a doctor who was a very nice chap just after he carried out a cistsoscopy on me if he had a minute to discuss a problem I had in understanding where indeed can TB affect in the body....... I explained to him that as a kid I had had TB but was resistant to that bacteria.

His reply was most educational because he quickly replied it can get any where!

He is now a clinical research doctor in the treatment of prostate cancer and other maladies. It might be pertinent to know that he was the only one out of 26 doctors of my acquaintance from 1978 to 2015 who seemed to understand that fact. I found that rather disquieting. The truth seems to be that there must be a drastic shortage of doctors who 'know' TB.