I was diagnosis end with Sarcardosis over 20years ago when Scans were first introduced.

[Cheryl_uk]

However I believe I have had it for over 33 years. I was first diagnosis with ? TB then lung cancer and when they were both ruled out they did not no what it was and anyway I seemed to be getting better. I had several relapses when the pain was incredible and walking was near on impossible. I had biopsies and all manner of tests but with no answer. Then about 20 years ago scanner came in and they were able to diagnose Sarcardosis. I then got it in my eyes and more recently my hearing has been effected. I then got the cough which I have had for about 8 years ago but have only in the last year found out that it is to do with the sarcoidosis. I am now on morphine, home oxygen, steroids and so many other tablets I could not name them all. My walking ability is under 150 yards and any form of exercise, has me immediately breathless. I like to laugh but it makes me cough, I am very positive with my life but get frustrated with my limitations. I am diabetic and have under active thyroid. My saying is if I wake up in the morning and my toes don't drop off I can cope with the day

My question to you all out there is what can I expect my next 5 years to be.

Regards

Cheryl

[Hidden]

Good Morning! I am sorry to say that I have no idea - my husband suffers with severe COPD but I am sure some lovely people will be able to answer you! But I did want to say how brave you are and how brilliant to stay positive. Long may you stay positive and as well as you can be. WIth much love TADxx

[Cheryl_uk in reply to Hidden]

Thank you, the support my husband gives to me is great, even to standing being with me when I wash my hair. I think I find that the most exhausting, showering not so bad thank goodness

Cheryl

[MarieW-F]

I have sarcoidosis. Probably have had it for about 10 years but diagnosed 2.5 years ago. I seem to be lucky (touches wood). While its ruined my lungs it seems to have gone into remission and left the rest of my body alone apart from my skin too. I am sorry to hear that you continue to decline - is it worth speaking to the Brompton?

As for your last question, I don't think anyone here can answer that. I think you do need to speak to someone who knowsmore about it. Good luck

Marie

[Cheryl_uk in reply to MarieW-F]

I go to Prof Webb's clinic in Brompton have been since May this year I have had so many test I do not think there anything they have not tested for At the moment we are waiting to see if they can get funding for a new treatment, after that they say the only other option is lung transplant..... Wow that's scary. Anyway never say never

Regards

Cheryl

[MarieW-F in reply to Cheryl_uk]

I am off down the transplant route too. You are right it is scary. Luckily my lung function increased a little so I am still 'too well' to be considered. Good luck.

Marie x

[123podmore]

don't give up ,you will fight back ,like all of as

[sassy59]

Who knows what the next 5 years will bring Cheryl but you do seem to have a very positive outlook on life which is great. I am carer for my husband Pete who has had sarcoidosis for 22 years so far as we know and seems to be in remission. He goes to the Brompton once a year just for a check up really but he also coughs a lot, has skin problems and takes so many drugs I don't know how he copes with it all.

Try and stay as well as you can and get all the help that you can. Good luck to you and take care. xxxxxx

[Cheryl_uk in reply to sassy59]

My husband looks after me as there is little I can do without coughing which in turn makes me breathless. 2 weeks ago I blacked out whilst climbing the stairs result broken collar bone. Mind you it is not that painful but I think that is due to the morphine I take. Well I can't say my life is boring.

Thanks for taking the time to reply

Regards

Cheryl

[onamission]

I also have a saying if I wake up and can't feel wood all around me i'm alive. I have COPD and I sill enjoy life just a bit slower but I do love a good joke we can still laugh without causing to many problems

[Cheryl_uk in reply to onamission]

Laughing is always good

Cheryl

[appyalison]

Hi Cheryl, hope you are feeling OK today. I am STILL in the process of getting a definitive answer. Lung con thought I had secondary lung cancer and I was tested for TB. Sarcoidosis is favoured by my lung con, Bristol said definitely not so slides were sent to Brompton. They say it is probably sarcoidosis AND hypersensitivity pneumonitis. If I do have sarc, then it is probable that I have had it for years and years which would explain why I have never felt properly well for so many years and have had bouts of being really poorly. I too have hypothyroid disease which started after the birth of my youngest 27 years ago.

I have had my eyes tested for sarcoid but, luckily, I am OK. The decline in my sight is due to large cataracts in both eyes. I was really upset as Boots have been calling me back every year for eye tests and selling me complicated lenses which I can not afford any more. In July I had eyes tested, glasses would have cost £550. Unpleasant comments were made about getting a prescription and getting glasses elsewhere. I have never ever dine this. Anyway, eye con tested my eyes for sarcoid in September when he found the very large cataracts. No explanation as to why they were not found. Anyway, I have pre-op on Thursday for left eye. Hope I am feeling well enough for op to go ahead soon. I do not think I will be going back to Boots!

Currently, I am not being treated for sarcoid, not sure why but it could be because they have at last looked at the hiatus hernia and are probably going to repair that and do a stomach fold to stop acid reflux. I also have an ovarian cyst which they are going to schedule for removal as it is so large.

Ihave no idea how much more damage is being done to the lungs because of no treatment.

How did your ear trouble start? I ask because I have had earache for the last month. It is not an infection but is a build up of catarrh behind the ear drum. I have seen 2 docs, steamed, steamed with Friars Balsam, massagef, taken decongestants, taken pain killers and used a hot water bottle. Still got earache! I have tried looking up sarcoid and earache - nothing. I was, therefore, intrigued to read your post about your hearing being affected.

I have no idea what the next 5 years will bring for you or me because sarcoid seems to affect each person differently. I always say I don't have time to be ill. That seems to work as I am bringing up my granddaughter but i have not been able to work for last couple of years. There are not many of us sarkies on here but there are a few so you ae not alone. Please take care and keep in touch. PM me if you like. Just press envelope on green bar. Good luck. Alison

[Cheryl_uk]

My hearing started to be effected about 6 years ago I have no pain but have to wear a hearing loop to hear the TV . Had many many hearing test but all were negative. When I saw the consultant and asked if it could be sarcoidosis as it was in my eyes and was mainly effecting the left side of my body. He made me feel like a fool to even suggest it he all but sniggered. This is something that does make me angry, everything you read about sarcoidosis they say they do not no what causes it, and yet when you have a problem that the doctor cannot treat they will not listen and just ignore you. By the way it has now been confirmed that I do have sarcoidosis in my ear.

Don't misunderstand me the consultant I see in St George's Windsor is marvellous and he does listen and always tries to do something about it I am very lucky to have him.

I must admit your story sound very much like mine withe the suggestions of TB and Cancer. All I can say is be determined and do let them feel you are a fool just keep pushing until you get the right answer

Regards

Cheryl

[Cheryl_uk]

Thanks for all of the support

Cheryl