diffused lung disease

been upto Brompton hosp under asthma clinic because of breatheless since july. However the first letter stated l do not have asthma, so my maidstone consultant was surprised to find out l was put in that section. Saying that as l told him at maidstone l went where l was put being they are the top lung and heart hosp.Their findings state they can find no reason for it, and basically classified it as imaginary illness. You can imagine how angry l was.

I have had lung problems for some four years now. My Maidstone consultant thought it was bronchililtis and treated me so until july, when l was taken off steroids and sent to Brompton as they were unsure what l really had.

on seeing Maidstone consultant end of dec, he has now referred me to Proffessor Wells at Brompton who deals with diffused lung disease which l understand means other fact like RA, gout, can trigger infection in your lungs.

Has any one else heard of this or been to Brompton for tests with this professor. Understand theses tests are done in a day, unlike the endless of trips we made into sept. I live in kent, and my hubby and l would drive there and often took us two and a half hours.

Waiting on my Brompton letter to come, but interested in others views.

12 Replies

  • Yes i travel from Maidstone to brompton for now every 9 months, a nightmare usually laid up all that week.I Have a lung test each time and wait hours to see the doctor.Going up in feb going to cost me 150.00 for a driver.I have a rare diagnosis so they still dont no how to treat it.Do you live in Maidstone,are you in ward 10 as a outpatient,mandy.

  • Thank you for your reply. My husband drives me. I also have a disability badge and have to book parking fortnight to the day of appointment as they only have five spaces near outpatient. Usually book my appointments to run after each other. Still have no idea what l have. Travel from Gillingham kent area. Are u under Mr. M at Maidstone hosp. Been with them over three years now but only under Brompton since July.

  • Hi yes at Maidstone next week mr mankragod.london early february.Took 3 years to get mine diagnosed, after having a op in guys.Weve driven various ways and always got there late for appointment for 930.cant go by public transport as cant walk far either.

  • We leave about quarter to six in the morning. Don't mind hanging around as long as l am there. Have not tried trains yet but if l do would get taxi to hosp. I too are under him, and been off steriods since July. At the moment on no meds, as they have no idea what l have. Even had a lung wash but nothing showed up.

  • Blimey thats good i reduced my steroids slowly over a couple of months for each reduction but lowest can go to is the 20mg.hope you get a diagnosis mandy

  • HOW bad are your long term problems, are you taking steriods mandy

  • Yes lowest can go is 20mg a day, chronic condition, complete change of lifestyle.On meds to tryto slow deterioration been on for years,on 20 medsa day.

  • Hi, l find it incredible that consultants, doctors or anyone should say that your illness is imaginary. Lots if lung problems are difficult to diagnose but nobody should give up trying.

    My husband saw a colleague of Prof Wells at the Brompton but not the man himself. Pete has sarcoidosis and should have been under Prof. Wells but never was.

    I hope you get answers soon and really wish you well. X

  • I would add that we used to go by train from South Coast but Pete has to have transport now. X

  • Sounds like l might get some answers under proff wells. They call it imaginary illness when they can't find any reason for it or can't place it in a named box. If u had a heart attack they could place u in that box. In my case no box. Thankfully my Maidstone consultant was not impressed and hence he's writting to Wells.

    Am l reading between the lines that Pete was not treated as liked as he did not see Wells. Did he get an answer to his problem though.

  • Pete spent ages seeing an asthma professor but does not have asthma. He was originally under Prof. Newman Taylor but he semi-retired so Pete then saw Prof. Durham who specialises in asthma. He also saw Dr. Studdy who took an interest in the trachea malachia that Pete has (when the throat collapses slightly causing momentary black outs) but never Prof. Wells. That seems crazy to me as he specialises in sarc. I feel that nobody is that bothered anymore because Pete has had sarc for nearly 25 years and not much can be done about it now. He does see a cardio consultant at the Brompton (Dr. R. Sharma) as he may have cardio sarc. No appointment available until June though. Good luck to you pamilia.

    Take care. xxxx

  • Had to laugh that Pete saw someone from the asthma clinic as so did l, and like Pete do not have asthma. What a waste of money and no productive. Not mention our time and expense. As to whether l will see proff wells, time will tell. See what the appointment letter says when it arrives. Hope Pete keeps good health. Xxx

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