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Thanks granny...some answers would be nice...need the better biopsy i think....has to be next on the hit list.

Thanks

Janie

I know it's hard what we all going through it's not fair to us but I am going to tell you what I do I don't know if you have Joel osteen he is a preacher and let me tell you he helps me it like he knows what you are going through its like God telling him what to say I been watching him for 5 years and when I first watch him he said give me a year and I will change your life and he did I am not saying he going to cure us but he makes me stronger how to handle whether it's good or bad that because gods telling him and believe whatever I go through God knows and tells him yes I get down but I know God carrying us I know when I go to Dr in devner I will get answers probably none I like but I look at itrail sometimes I want to throw in towel but don't because if Joel and God please keep your faith it will help granny

Glad to hear you find comfort in that..im not really religious or follow any preacher like stuff, but thanks for the advice...just completely frustrated with it all..not sure where you are from but here there seems to be limited info on it and that goes for doctors that find it easier to throw pills at you without investigating properly..im just moody today well its 1.01am here...been sleeping all day!!

Janie😊

I am in rock springs wyo If you need talk I am here granny where you at

Im in melbourne Australia..thanks!!..yea just having a bad day..fed up cause been off work now for nearly 2 weeks and missing out on doing stuff...have two part time jobs and prob need to give one up but dont want to until i get confirmation of disease, was hoping to go back this week but its looking unlikely...i dont normally bitch and moan so much but think the steroids r affecting my mood and its prob all coming out cause ive finally found others who are suffering and worse than me...my friends and family wouldnt even know how to pronounce sarcoidosis, they know a little bit..but even from what i read its like nothing and some people dont know they have it and after seeing all this stuff here and on other groups i think the seriousness of it all has hit me as well...so feeling unwell and a bit annoyed about the care involved here in aust..anyway maybe some more sleep will help i hope..so hope its not rude are you an older lady or is granny a nickname like me..most people call me Herbie!!

No Georgia my name but my granddaughter calls me granny it's OK to be mad and yell I do that to especially when things flare up it sucks having this I am 59 you are going to laugh But love the way Austila people talk I always watch crocadile hunter steveP

Yea it sucks big time..🤕...i just turned 49 so an older mum to with 2 teenage girls nearly 13 and 15...its been school holidays here and they go back tom...Yay!..no i feel bad cause havent been able to do anything with them and they to get fed up...such is life!!...anyway nice talking to you...will try sleep have to be up for school in 4 hrs...i know they r not going to want to get up..have a great day..😊

You a have a great day to just take one day at a time granny

Hi tyagi,

Thanks, so there is some hope for us, just been a long and frustrating road to get to this point, but glad i found these sites to hear others stories, cause i thought i was the only nut in the world who had this disease, i searched for support groups here in oz and nothing much around that i could see.  Yea i get all the symptoms like everyone, had severe night sweats for about 3 yrs but thought it may have been age related but hormones were fine, in actual fact my bloods were always pretty good apart from Vitamin D which was low a couple of times nothing showed up until i had ct scan...good on you for conquering it, think im a long way off but yea i will try hang in there, i think once my medications are right i might feel alot better, fingers crossed.

Thanks

Janie

Hi Janie

I would hesitate to say that I had 'conquered' Sarcoid. I have about half lung capacity thanks to the scarring, and that isn't going to improve. And I still get all the other symptoms. When I get the overwhelming tiredness, I take a siesta. With the joint pains, I rest and give myself a break. And I spent 4 weeks (mainly in bed) with a bad chest infection a couple of months back. However, in between the bad bits, life is for living and I do try NOT to live in anticipation of the next down period.

Yes, let's hope they manage to find the right meds for you!

Tyagi

Hi Jayne,

Your story is similar to mine, actually very similar, Ive been chasing my tail for a diagnosis for the last 5 years, spent loads of money, time and misery basically trying to find out what is wrong with me.  Had chickenpox in brain and lungs in 2009 and nearly died, caused encephalitis and pneumonia, I started getting severe migraines not long after and was diagnosed as a chronic migraine sufferer and basically put on vessle closing drugs to ease the pain of those (now have chronic small vessle ichemia in the brain as well which I blame on the drugs the neuro put me on and have only recently found out just how dangerous they are and it came from him, he never told me any of that when prescribing them) was also on host of other meds and recommended to have botox. My now EX doctor treated me like a hypochondriac and can't tell you how many times i was told to go on anti depressants, very frustrating and angry as well I know how you feel, i was also sent to specialist neuros and rhuemotoligists but ended up being told the same. It has been a rollercoaster of anger, sadness, anxiety and i do now believe depression as a result of the treatment I received from the medical world here in Australia and having to live with this crap for as long as i have with no real answers, it was by pure fluke I went to a doctor to get my moles checked and he noticed my heart rate was way too high but low blood pressure so asked a bit about my history, I was like you dont want to know, I was reluctant to tell him anything because I had given up, but turns out I did and he investigated and from day one said he believed I had an auto immune disease so put me on a potent steroid and all my symptoms disappeared, the steroid wreaked havoc on my health tho, it wasn't prednisolone but much stornger but proved something was wrong, by this time I also had like a body migraine, aching joints and for a long time  prior to this had suffered from severe pins and needle and numb arms esp at migraine time, some weeks i would have the migraine for as long as nine days. In Oct last year i had chest pain and as I have the heart thing i went to the hosp and they thought i had clots so did a ct scan and found loads of scarring, granulomas and enlarged lymphnodes, had a review ct scan in jan this year and the lymphnodes and got larger so was finally sent to a lung specialist who said he was pretty certain it was sarcoid, I was like what the hell is that cause I'd never heard of it, he showed me the ct scans and it looked the same as the ones i had seen of my brain which my neuro had insisted was scarring from migraines, dont believe that now, think its in there as well, so yea i completely understand your anger and frustration, 4 weeks ago i had a bronchoscopy and two weeks later became really ill with a lung infection and deflation and am still unwell was hospitalised last week and put on intravenous drugs but they didnt work, my latest issue is my vision so pursuing that at the eye hospital but earliest app is august, and after seeing my gp today will have a lymphnode biopsy done when im better, they say this is the only real way to confirm sarcoidosis, I actually requested Facebook friends cause like you i was sick and tired of being classed as someone who was complaining for nothing, it truly is a nightmare of a disease to have farless having people who don't believe you, i basically cut myself off and became a recluse and all my life have always been really social and loved to party and so on, although age is def starting to catch up, so these days i do bugger all, currently off work but normally work two part time jobs, but really considering giving one up, its all too much, have to teenage daughters, hubby, 4 cats a dog and last but not least a bunny, so my life can be crazy at times and can be working 6-7 days a week, my shifts are short but still it means no rest, but now i find i just give in to it, I have to and feel exactly the same as you with kids, but there are more bad than good days at the moment, where are you from and are you on Facebook, you can request me if you want and can tell you the site, its great, lots of similar stories to ours and lots of great info and the best thing is you don't feel so isolated and alone with all of this, ive only been on there for a few days and learn't so much already, its worth joining and this site has been good as well, but sometimes hard to navigate or you lose messages and stuff, anyway hopefully you have facebook mine is under Janie Herbie Cubranic, it's great to hear your story and trust me you are not alone...it really is a nightmare living with it and any support helps esp from others who know what your are going through.

Janie..

Hi janie

That would be great I'm in England, I'm on Facebook jayne Adams (jayne plant ) .