sarcoidosis ....TB

[dilly20]

Hi everyone i have been fasinated at what i have been reading about sarcoid and TB has anyone else read about this? Would love to know what others think

[sassy59]

Hi dilly, l read some years ago that sarc was on a parallel with TB. It’s also a great mimic and is often confused with other health problems such as MS.

You take care xxxx

[dilly20 in reply to sassy59]

Hi again sassy why i have found it so interesting is...my Dad came back from sea with TB he gave it to his brother who sadly died of it and also when my mum died at the age of 26! one of the things she died of was TB and now i have all these lung probs ...i feel there has to be a strong conection there. Take care xxxxxx

[PMRPete]

Tuberculous sarcoidosis: Is it a separate entity?

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

[dilly20 in reply to PMRPete]

Hi Pete yes tyvm that is what i read

[sassy59]

You could be right dilly. That’s so sad losing your mum at such a young age and then your dad too. Wishing you well. Xxxx

[dilly20 in reply to sassy59]

Hi sassy i know i have missed my mum every single day of my life i have a pic of her in my hall and i kiss her and tell her i love her everyday...my dad didnt die of tb hon it was my dads brother my dad didnt die till he was 69 and that was his heart but he did have tb when he was younger take care xxxx

[sassy59 in reply to dilly20]

Oh sorry dilly, hope l didn’t offend. Shame though. Xxxxx

[dilly20 in reply to sassy59]

hi sassy hope you and hubby are ok just to keep you updated ive been to the royal Brompton again this week stayed in for 2 nights...had a lot of tests but now I'm still waiting on a full diagnosis...he said in November that he didn't think it is sarcoidosis to cut a long story short my local hospital had lost my files from 2011 when I had biopsy done of my lungs and lymph nodes....I kept chasing them up before xmas and in the end they said they had found them and sent them to London....not true!!!! so the royal wants to see them to see if they think it is sarcoid or not before treating me...all this time ive had no meds since april last year! when I got home I had a look through my paperwork from the hospital that did my biopsy in 2011 guess what it said on diagnosis part ...... interstitial lung disease of unknown aetiology .....further down it says vat lung biopsy however has revealed features of sarcoidosis. Now tell me if I'm wrong sassy but if he was sure I had sarcoidosis surely that would have been written on diagnosis would be very grateful to hear what you think as now I am left waiting again until royal Brompton see the biopsy reports .thank you sassy take care xxxxx

[sassy59 in reply to dilly20]

Hi dilly, it’s so confusing when Doctors can’t make their minds up. Pete has sarcoidosis and in his Brompton notes it also says ild.

I just hope the Brompton get in touch with you soon with a definitive answer. You need to know what’s going on and to be left without medication is wrong. Can you get in touch with them?

Please let me know how things go and l do wish you well. Don’t let them fob you off.

Take care xxxxxxx

[dilly20 in reply to sassy59]

hi sassy tyvm for your reply I'm going to ring Liverpool heart and chest hospital on Monday as they are the people who did the biopsy in 2011 and ask can I go to the hospital and personally pick copies up of the things that London want and all being well I will fax them to London. I'm not really sure where I stand on demanding these copies do you know whom I could contact for advise please sassy? thanking you again take care stay well and hubby too xxxxx

[sassy59 in reply to dilly20]

I would ask Liverpool to send the documents to the Brompton. If you get no joy then contact PALS at Liverpool and explain things to them. Otherwise seek advice from BLF helpline on 03000 030 555.

Good luck dilly, take care xxxx

[dilly20 in reply to sassy59]

ty so much sassy I am going to ring both in the morning as I feel like I'm sinking faster by the day....I do so thank you from the bottom of my heart for your help take care xxxxxx

[sassy59 in reply to dilly20]

Your welcome dilly xxxx

[dilly20 in reply to sassy59]

hi sassy hope you are both well....I wrote a copy of a letter I got a couple of weeks ago on here last night I cant see it but mrsmummy says it is up for people to see can you read it and let me know what you think ...Ive rung them today and got answer machine left message but did a week ago and still not heard anything xxxx take care xxx

[sassy59 in reply to dilly20]

I replied somewhere dilly but may be on a different thread. Xxx

[dilly20 in reply to sassy59]

hi sassy thanking you take care and keep well you and hubby will keep posting what is happening next xxxxx

[dilly20]

no no not at all sassy speak soon take care xxxxxx

[dilly20]

Hi sassy hope you and hubby are well ...I went to royal brompton it was more of a consultation asking me lots of questions and just a couple of tests as in one being 9 files of blood ha certainly are thorough .I have got to go in he said about 5wks time for lots of tests and a bronchoscopy not sure how long I will be in for but I will keep in touch and let you know how things are going when I here next from them. I wish you and yours a very merry Christmas and good health .Take care love and best wishes xxxxx

[dilly20]

hi can anyone tell me if they think this is wrong as I feel like I'm going out my mind with worry and no one to talk too

[dilly20]

I am going to show you a letter I got after having lung tests done the end of jan

[dilly20]

not sure if ive done this right to send and its going to be a long letter for me to type and I'm rubbish can someone just tell me if this is showing to you all plz

[Wittycjt in reply to dilly20]

It’s showing 👀

[dilly20 in reply to Wittycjt]

tyvm witt that's how long it took me to type it I'm rubbish lol xxx

[dilly20 in reply to dilly20]

hope your still online to read it xxx

[Wittycjt in reply to dilly20]

What does tyvm mean? I’m new here

[dilly20 in reply to Wittycjt]

thank you very much xx did my new post ie the letter come up? xx

[Wittycjt in reply to dilly20]

Yes it did.

[dilly20 in reply to Wittycjt]

thanking you xx

[dilly20]

well heres hoping it works plz god...extensive upper lobe emphysema with mild to moderate emphysema in lower lobes.There is reticulation and traction bronchiectasis in the middle and lower lobes with a subpleural distribution. Minor tree-in-bud nodularity in both lung apices is noted suggesting bronchiolitis due to either aspiration or infection(possibly sub clinical). Numerous small volume mediastinal lymph nodes noted .Conclusion ....Appearnces are those of upper lobe( emphysema with UIP). or sarcoidosis as indicated in history is uncertain. The current extent basal fibrosis has increased since scan in 2015.......On other page he has put diagnosis pulmonary fibrosis-other (free text) known sarcoidosis but referred for recent symptomatic decline and ct findings not classical for sarcoidosis.........

Thank you if anyone is reading this he said he wants to do a broncoscopy as he thinks I have other things going on but he doesn't think I have nor ever did have sarcoidosis and I was told in novmerber by him that he was waiting the results back from Liverpool hospital from my biops done in nov 2011 when I was diagnosed after with sarcoidosis ....As I said I went into hospital had these lung tests done and he again said he was waiting for biop results as he didn't want to start me on meds until he and his colluges look at them ...My point is I have nottt been on any lung medicatios since last APRIL ive been in bed with a terrible chest infection for 2 weeks and had 2 lots of antibiotics still have a cough like croup no steroids either for that .Surely this is wrong feeling so ill I rang hospital to see if they had had the results they wanted from Liverpool this was last week they said NO!!! I rang the hospital in Liverpool and asked why they hadn't been sent se said....THEY HAVENT ASKED FOR THEM..she then very kindly sent them for me and that was last tues and ive still heard nothing back from my hospital...I feel like I will have a breakdown soon if I don't get someone telling me the truth of whats going on why am I waiting so long to go on treatments ,I'm so tired of feeling like I'm hitting my head against a brick wall and getting nowhere....I just feel so weak with it all....so sorry to be so long winded in typing this will need a long lie down now ha ....where next?

[Wittycjt]

Call your doctor and remind him of this and your frustration. Ask him how is S/he planning to help you as it’s been months and you still aren’t feeling well and “need” to feel better, good wishes

[dilly20]

thank ing you yes I am going to try getting him on phone in the morning ..rang his secretary last monday so rude and unhelpful she said I will send a message to him I said will I hear back today she snapped I will get back to you whenever they get back to me!!!! I was left in floods of tears yet again and I STILL haven't heard a word back from them..

[Yatzy]

Oh dear, dilly, you have been put in a very difficult situation. I’m just a bit lost on where you’re up to now. I’ve had dealings with the Liverpool Heart and Chest and found them to be exemplary. I have had to chase paperwork, promised phone calls there but secretaries very helpful....get there quite soon. I know nothing of the Brompton though.

It seems to me that now things have got in such a muddle, your GP should be able to sort it. Stay on the case, don’t let weeks go by. If you don’t hear within a few days, keep asking and asking. Best of luck to you. Your situation sounds awful. Let us know how goes...

[dilly20]

hi ty for replying its not lverpool that haven't helped the secretary there has been wonderful the lady from Liverpool has faxed what they say ie the bromptom said they where waiting on last Tuesday and ive still not heard by phone or letter surely 12 mths next mth it will be is far too long without at kind of treatment for my lungs which are clearly getting worse everyday as I at ive now been diagnosed with pulmonary fibrosis along with the copd bron and qmark sarcoidosis plus I'm waiting for them to do a broncoscopy as he said he thinks I have more going on...I need some help and feel I will do mently also if I don't get seen to soon thanks again for reading take care dilly

[Hidden in reply to dilly20]

Good afternoon dilly20 ,

Sorry to hear about how things have been.

I'm more than happy to book you in for a call with one of our nurses if you would like to have a chat with someone who may be able to offer you some advice on your situation?

Let me know if you'd like this and I'll PM you to arrange a call.

Kind regards,

Ben