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please does anyone suffer from Langerhan's Histiocytosis

10 years ago•14 Replies

have . sarcoidosis. Had every test and scans possible at the Royal Brompton and on oxygen. So worried and scared all the time causing a very panicky feeling.

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heho

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14 Replies

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peege10 years ago

Hi there Heho, I so sorry you feel like this. I'm afraid I'm ignorant of you diagnosis, however, I wanted to offer my empathy, very best wishes and hope you get some understanding replies soon.

In the meantime, please call the BLF helpline, they're open now. 03000 030 555, costs similar to a local call. Also speak to your GP and tell him/her how you feel.

Thinking of you, Peeg

Louisiana10 years ago

I don't know of your diagnosis, but just wanted to send you some comforting thoughts and wishes.....do do do ring the BLF........and keep "talking!" with this group

heho• in reply toLouisiana10 years ago

Thank you so much for reply wi will certainly phone them as finding it so difficult to breath and feeling weak. Thank you very much.

heho• in reply toheho10 years ago

THANK YOU

creakykneed10 years ago

Hi Heho.

I'm afraid I'm just another "hello"er so I hope you got some help from the BLF. I haven't heard your diagnosis mentioned on the site before so you may not find much detailed advice here but you will find lots of empathy and support. And as none of us really sleep well its a great place to turn for those 2am panics. X

(Slightly bumping your thread, can I ask how long it took the Brompton to diagnose you? I have my first appointment there at the end of July as my local respiratory docs don't know what to do with me!)

heho• in reply tocreakykneed10 years ago

THANK YOU creakyneed for reply to me.. I went to Royal Brompton 3 times and must say they were all so wonderful so please don't worry about going there. You will get the very best of attention. Diagnosis was made couple of months ago. I could not fault them in any way. Have another appoinment in November and then yet again another appointment with Consultant near my own town after that. For me London is a long way to travel for me.I very much appreciate your replying. I suffer so badly with not being able to breath and get so scared. But Royal Brompton will be the best you can have in the way of treatment. I wish you good luck. and thank you once again.

creakykneed10 years ago

Just a thought, but have you spoken to GP about anxiety meds? Might be worth considering if they are ok with your condition.

heho• in reply tocreakykneed10 years ago

thank you. will ask GP if I can have something to help. Very much appreciate you tholughts.

jenss10 years ago

Hello heho, I agree with creakykneed regarding the medication to reduce anxiety. I also was very anxious when my breathing problems started (don't have diagnosis yet) and could not sleep, relax etc. This made me feel very tired, cranky, horrible. I talked with my GP and they gave me a low dose of an antidepressant. It helped me a lot to relax and I sleep well now. The drug (I think it is a tricyclic antidepressant and I take it in a dose 10 times lower than would be given for depression) is not addictive and I have not experienced any side effects. I hope you can get the anxiety under control and will feel better soon. My best wishes xxxx

heho• in reply tojenss10 years ago

Thank you so much for your reply - in a way its a good thing that I am not on my own with this panic thingy. Its awful. But again thank you for your kind words.

jenss• in reply toheho10 years ago

Yes heho you are definitely not alone with the panic thingy. It is only human to react like that when confronted with your own mortality in such a dramatic and drastic way....Be strong, do everything your drs say or at least discuss with them, and be positive! As they say:where there is life there is hope. Take carexxx

leanne758 years ago

iv just been told i have langerhans cell histiocytosis hows things going with you as i see u posted this a few years ago?

mrsmummy• in reply toleanne758 years ago

Hi Leanne. This is an old poster and the member who posted it has not posted for the last 3 years. You may be better posting on a newer thread or starting your own post. Welcome to the forum.

leanne75• in reply tomrsmummy8 years ago

yeh i have just done that thanx

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