Langerhans cell histiocytosis

Hello I got my results from my lung biopsy yesterday An Iv'e got a rare disease Its called LANGERHANS CELL HISTIOCYTOSIS Iv'e prob always had it but it goes in remission sometimes' Trying to understand it at mo its something to do ith my white blood cells i make to many so they can cause lung lesions or affect other parts of the body all my symptoms even the little scars that come an go over my skin are to do with it the tiredness aches bad memory breathless is all part of it they are going to send me for reg check ups to make sure it dont get any worse if that happens they treat it with chemo or radio the lesions can become malignant but their not at the moment yaeh lol they said its usually in children not someone my age so think ive alway had it thats why ive been ill on and off all my life a rare disease involving clonal proliferation of Langerhans cells, abnormal cells deriving from bone marrow and capable of migrating from skin to lymph nodes. Clinically, its manifestations range from isolated bone lesions to multisystem disease. LCH is part of a group of clinical syndromes called histiocytoses, which are characterized by an abnormal proliferation of histiocytes (an archaic term for activated dendritic cells and macrophages). These diseases are related to other forms of abnormal proliferation of white blood cells, such as leukemias and lymphomas.

15 Replies

  • Rank sorry to hear your DX how they DX that.

    Was it bone scans biopsy did they say out about ya B12 & Folate stuff

  • Hi D3NIS my symptoms were chronic fatigue breathless cough joint pain I also have pernicious anemia and b12/ folate acid deficiency I had xrays then cat scans that showed lesions on both lungs they removed two lobes from my right lung for biopsy thats how it was diagnosed

  • How long was your docs aware of ya b12 folate issues.

    Its unusual to get one from lung biopsy BUT am not surprised how have you GPs been

    You had any battles with docs convincing them

    Am sorry about ya dx tho hope the manage ya condition better now

  • I was diagnosed with pa first then b12/folate about 15yrs ago also had anemia as a child It feels like Its been an up hill battle trying to convince Drs of my symptoms They told me at the hospital that lch is so rare they didn't even have any leaflets on it (their sanding some theythought i had lung cancer thats why they did the lung biopsy I now can understand why most of my life I've been ill on and off

  • The anemia would of done it i think given you history doc's should oc been aware .. Personaly a think the neglected stuff given your anemia.

    Is like leukaemia bone lesions so the should of spoted it

    Have you had problems with bones brakes fratures

  • I agree I think that it should of been spotted I've never broke any bones but have had breast cancer and strange little scares that appear then fade my blood test have always came back with raised white blood cells like I was fighting an infection have been in and out of hospital most of my life but It was never picked up until now Im now 52

  • Defo agree i know how frustrating it can all be i recone the just put it down to ya b12 and let other stuff slide i know you can have stuff like that all ya life then it decides to become active.

    Am going to be seeing doc myself over abnormal blood cells.

    My B12 was 250 and my folate was low white cells high snd over cells boarder line.

    From what have read when blood suffers rouelexinng its not good plus can make you breathless as i suffer COPD a know low b12 wont help maters in my case.

    Ad ask your docs about blood transfusions and stem cell therpy DON't let em get away with nout.

    Cheers wishing you well

  • The reason I had a biopsy was because they thought I had lung cancer because breathless all the time and cat scan showed lesions in both lungs but for years they said I had copd so get them to check your lungs scans maybe? kind regards

  • Hi cheers a defo give them run for the money AM going to having it out with them currantly my lung doc's not talking to me.

    Last time a went for 3 month revew never even did bloods am apauld about.

    Am under nurolagest now for what my GP as said are compex immuty issues.

    What ever that it

  • I always felt like the Drs would look at me like a Hypercondriac so be persistent D3nis we all know how our bodys should feel and know when something is not right good luck

  • Hi cheers thats what its like here lol

    Can i ask did you delelope a ezema psoriasis rash on soles of you feet at a time you situation changed

  • O my goodness yes soles of feet as well as arms and legs they come and go Drs never took any notice when I showed just said psoriasis even though it didn't really look like what the usual psoriasis looked like more tiny like scares that would come then fade

  • Defo agree with you there THATS what my doc's did.

    I have psoriasis on leg all my life then as i got bad its appeard on soles of my feet looks nothing like that on my leg prodarty asked my doc to refer me to dematolagest but my gp said same as the said to you and dismised it .. is shocking the tricks the get away with

  • Hi Winterrose , Your post really rang a bell with me . Almost four years ago my husband was also diagnosed with an extremely rare lung condition ( Idiopathic Pulmonary Haemsiderosis) .He is thought to be the only person in Wales with it & , like your condition , it normally affects children ( usually little girls ) - He was diagnosed the month of his seventieth birthday . The worst part with having a rare condition like this is that so little is known , medically speaking & we have as yet to find anyone to talk to who has first hand experience about it . I wish you all the best , Helen .

  • Hi Helen thanks for your reply I was told that my condition was so rare that the hospital didn't have any information on Lch and that It was sometimes called the orphan disease : A disease that has not been ?adopted? by the pharmaceutical industry because it provides little financial incentive for the private sector because of being rare I hope your husband finds the answers to his disease all the best to you

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