Sarcoidosis - not enough care and attention given to sufferers

You very right there it's unbelievable how much you have to fight than don't know about it I not only have in lungs but behind liver know least we are not along I don't what people talking about stages can you explain thank you granny

4 months ago I was diagnosed with Sarcoidosis. It's a scary and isolated road to walk down. The lack of infomation from the professionals is very frustrating. Does anyone know how to treat the break outs?  

Hi ailsa june,

I know exactly what you are talking about. Fortunately for me I live in Germany and just finished all the testing there is (this is the second time for me) but this time they also did an echocardiogram and a bronchoscopy, so I'm hospitalized again. I've been told that sarcoidosis is very hard to detect and I'm not from Scandinavia, nor am I Irish, African-American or from Puerto Rico. I'm plain white, but I guess everyone can get that. I really wish that people in other countries are treated the same, regardless if they have the money. But that's the way it is, you can 'actually' buy your health. I will be put on steroids again, which I hate, to many side effects but it will not go away if I don't take it. You know yourself what happens if you stop taking it. I moved back to Germany from the US and now I'm kind of glad because it would have probably cost me an arm and a leg to get tested and treated. I hope you are doing well and keep your head up.

Ailsa,

Your post is like a breath of fresh air, because I am going through the same thing.  I am a veteran, and am being seen at a VA hospital.  I was diagnosed with Sarcoidosis in 2007, unfortunately the same year that my wife died from Stage 4 breast cancer.  When I mention sarcoidosis, it is like the doctors don't hear me.  They go on talking about something else.  However, I have a plan, and I am going to force them to address this issue.  I am suffering, but I am relieve to know that I am not the only one.

 

I agree with you 100%, there is not enough understanding of this disease and certainly not enough information regarding the severity and symptoms it causes and everything i look at seems to be conflicting. I too had severe night sweats and chronic migraines with pins and needles constantly and like you a simple task like vacumming would break me out in a sweat, I had a bronchcosopy end of may which was inconclusive but keep getting like burn marks and spots like pimples but different mainly on my chest and the odd one near my shoulders, ive just had this biopsied and hoping that confirms sarcoidosis although my lung specialist says just by my ct he can say its sarcoid, far out is there any easier forums than this page, it takes forever to write anything on here, is anyone here on facebook that can give me some information on personal experience 

They are doing research in the London free hospital on sarcoids look into it x

I was surfing around to try and find a reason for my sudden onset excessive sweating. Then I found this page and a lot of my other symptoms came up. I have some shadows on my left lung. I had X-rays, CT MRI and I was told it's nothing don't worry about it. Now yrs ago they found a small pituitary tumor which they called a prolactinoma and meds control that. Now I have hypothyroidism again meds for that. I had so much back pain that I've had three lower back surgeries and one neck surgery. Which really didn't help the my knees started acting up and I was told I had arthritis and had a partial replacement on both knees. Again not much help. I'm tired all the time my quality of life is crap. My family is tired of hearing me and I can't blame them. My main complaint is the damn sweating!!! I get out of the shower and need to go right back in. It's so embarrassing that I hardly go out anymore. My husband is retiring in3 weeks and is not happy with my physical state. Every Dr has a different dx. And no one will address the sweating. Needless to say I have been dx as a chronic pain patient and I'm on all sorts of meds. They say the sweating is from menopause and meds. Is west at night and just walking through my house which I have to keep my a/c on 73*. Everyone complains it's too cold and I'm still dripping in sweat needless to say it makes you depressed so another Dr and more meds. This has been going on for more than 10 yrs is there any help for the sweating. I'm going to an Endo in 3 weeks and then a respitory Dr after that. So tired of Drs blowing me off. I'm no pansy and I'm about to go postal on my Drs. Right now my A/c is running and I have a fan 8 " from me. I could handle all the other symptoms but the sweating( just my head and neck and shoulders) is really making my life hell. The next Dr who tells me it's menopause I may just punch him. Please any helpful advice and what questions should I ask all these morons. Thank you I was feeling so down till I found this page.

Maureen

Hi, Im stunned to hear that someone else has the same trouble with doctors that I have, I was first diagnosed about 12 years ago with lung Sarcoidosis, everything seemed normal untill 3 and a half year's ago when I collapsed with what appeared to be a stroke, this left me unable to walk for about a week, Im still numb and weak down my left side and after 3 similar episodes I now have a constant throbbing headache that never stops.

I now know That I have it on my skin, my sinuses, my joints and I can't get a straight answer as to I have crohns disease or bowel sarcoid.

As you stated most doctors avoid you like to plague because no one knows anything about it I had to argue with my neurologist to get a referral to the Royal Brompton in London, over several months they sort of ruled out brain and heart involvement although I still have a loop recorder fitted. Then they discharged me back to local care for everything else, so it's back to square 1,,,,,, I give up,,,ffs