Is there anyone here with unspecified lung disease?

Not been well for couple of years. Very tired and breathless. Recovering from lung resection. I have Lung disease but they do not know what it is. Monitoring and maintenance is what they are talking about. This is all new. Not sure what to think. Can I get on some sort of drug trial? Does anyone specialise in unknown lung diseases?

6 Replies

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  • Try Royal Brompton or Papworth Hospitals.

  • Thank you mapal.

  • Hi Sorry To Hear About How Unwell You Have Been ... A See You Talking About Drug Trials Are You Talking Vitamin Supplements Mainly Vitamin B12

    I Have Found It Helps Me In My Condition ... I Only Take It Every Other Day And It Seem To Work Well With My Blue Inhaler And Red Steroid One ....

    Just Thought A Would Share My Findings Experience Anyway All The Best .... :)

  • Hi dazisnotsogood, Thank you for replying. I feel rather isolated to say the least. I have no idea what vitamins to take. Is B12 recommended? I have a blue inhaler and purple one and Omeprazole for acid reflux. I will certainly try vitamin B12. Thank you so much for sharing your findings and sending your good wishes. Good luck. :-)

  • Hi Av Looked Into Drug Trials Myself For Obvious Reasons .... But Vitamin B12 I Have Found As Made Me Feel A Lot Better ....

    And From What I Have Read Will Help Your Lungs And With Stomach Acid And All Sorts ..... But Like A Say I Took One Every Other Day Not Every Day

    There Really Is No Need To Feel Isolated As You Will See The BLF Forum Is A Great Site .... Even Tho We Do Have Our Little Spats

    But Hay That Part Of Our Conditions .... But Yes You Are Not Alone And There Are Others And BLF Helpline For Help And Advice

    Thanks For Reply All The Best

  • Hi Daz, I was a bit concerned about the big spat over the weekend. Quite relieved it seems to have settled a bit. I had been taking B12 as part of muti vitamin but hope to feel stronger tomorrow so i can get to health food shop for B12 tabs. Thank you so much for the help. I am still sorting out feelings and wondering about my 8 year old granddaughter who I am bringing up. She has had a rubbish start to her little life. Do you feel worse on cold, wet days? I have felt rotten all day. I really like the humour here and the fact that I can learn from other people. Keep the comments flying. Thanks. Alison :-)

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