Sarcoidosis

[lumpy]

Hi everyone, im new. Have just this week been diagnosed with sarcoidosis!! For a couple of years now i have been plauged with ill health, severe fatigue, aches, joint pains and extremly painfull lumps over my hands and up my arms. There like explosions of agony every time they are touched or knocked. I have had an MRI scan and are now waiting to see a neurologist to discuss the condition in futher detail. I havent been told too much about it so really anxious!! Would really apreciate it if anyone could offer me some advice or personal experiences? Thanks x

[annie+]

Hi Lumpy I'm Annie and I to am new to this site. What can I say, well I've been a sufferer for 15 years now and it's been a bit of a roller coaster ride. What you are experiencing is a common set of symtoms that all sufferer's face everyday, the fatigue is I think caused from a lack of oxygen getting into your bloodstream. The joint pain is caused by the Sarc's having a go at them, and the red lumps you have on your arms are called Eyrthema Nudosum (please forgive the spelling). The fever is generally an indication that another lump is coming to the surface they do go down, but if they come up again in the same place they leave a bruise behind. I will say that the doctor's will want to put you on steriods straight away, my advice is to refuse saying that you want to keep them for when the Sarc's attacks somewhere like your eyes or it just gets to bad that ordinary painrelief has no effect. The best defence that you have is your own immune system, so make sure you take your VIT C to help it stay working. Good Luck. Regards Annie.

[lumpy]

Hi Annie, its lumpy Re:Hannah. I really apreciate your reply, im still in the dark about it all and your comments were helpfull. I an currently awaiting an appointment with a neurologist, as they think i might have neuro sarc? I really hope i can get my pain under control as this agony is affecting every part of my life, and dont know how much more i can take. Hope to speak to you again. Good luck! Hannah x

[annie+]

Hi Hannah, Annie here. I'm sorry to hear that your in so much pain at the moment. From your last post you didn't say that the doctor's were going to investigate Neuro-Sarc's, well that being the case I'm afraid that I don't have Neuro-Sarc's so I can't advise you on the treatment of it. So you will have to rely on the doctor's recommendations whilst your getting to grips with your symtom's. You didn't say where you come from, I'm in GB. I myself am currently going through a flare up, and yes it's painful but as an old hand at this game very annoying to lol.
As you've only just been diagnosed with this, you will soon be starting what I laughing call the why me Lord syndrome. It's a type of depression that is brought on by other people who have never heard of this, the only comment they can make is that you don't look ill. When you try to explain to them what is happening, they usually say "OH" and walk away. The only advice and and give you on this is don't bother wasting your breath, this is what I think trigger's the syndrome. I know the thought is depressing enough in it's self, but as time goes by you will see the people who are the stayer's which will help you in the end. But try not to put to much on your friends and family and you never know, you may just get away with it. It takes year's of watching how your symtom's occur for you to start to understand the nature of the beast as I call it lol. There is no known cure for this disease so when a doctor tells you it's gone, take it with a pinch of salt it's only hibernating to incubate some more. That's all I can tell you at the moment, but I will try and answer any querries you have in future. If the doctor's offer you a chance to go to a pain management clinic grab it with both hand's, the advice they give you maybe useful through the year's to come. Let me know how thing's are going in the future for you. Regards Annie.

[clr]

Hey - I am also new to this forum, and have been looking for some answers myself. I was FINALLY diagnosed with Sarcoidosis about a year ago (after many many scary and frustrating results!) I seem to have "lucked out" as I do not have all of the horrible symptoms I have read about on this wonderful www! I required a chest x-ray for another problem (I frequently have issues with my immune system, lung infection, & psoriasis - which was of very high concern for my GP.) and I lucked out with a Dr. from S. Africa, where apparently Sarcoid. is more frequent...From what my doctor has told me, it is pretty rare (esp. in Canada & USA) - and very hard to diagnose (It mirrors many other things...cancer being one of them. I was told that I had cancer - Lymphoma - for about 3 months before the tests came back neg.)
Symptoms I have include: Excrutiating joint pain (as described by my dr. as "spontaneous arthritis") fatigue (my lifestyle has totally changed based on the 2 of these things, which is why I insisted on something being wrong in the first place!) and insomnia - not sure if these are symptoms of the disease, or of something entirely seperate.
I understand that I am one of the very lucky few who was diagnosed VERY early on (again, based on my Dr. from S. Africa) and haven't presented most of the horrible symptoms as the rest of the folks I have been on touch with....but I still do have questions - of which I cannot find answers. I have found that the Health Care professionals that I deal with are well within their realm of service, but cannot offer me specific, individual results. I have been in contact with a dr. in the US (as far as internet searches go, the US seems to be the only source of info - am in Canada) who may offer some additional insight - but obviously - I don't have any experience with this Dr. so will reserve my "judgement" for a later date!

I wish you all the best! Cheers!

Carrie

[annie+]

Hi Carrie, my names Annie and I've just read your post. You are correct that Sarcoidosis is very rare, that's why the doctor's generally say "they don't know much about it" which to me is a bit of a cop out. That's why I went to my local library in the first place and read all they had on the subject, that was 10yrs ago. When I started quoting from the textbooks they started doing their homework to lol, I told them back then that I didn't want to be one of the 24% that died from this so we better started to work together to prevent it. From reading the book's I was able to determine when I contracted this and how,which was lucky for me. I have to admit that I personally don't buy into the some of the reseach that was published on the net by the university of Utah, saying that it is your immune system that actually does the damage. As the Sarc's just love anti-biotics, the first and last line of defence that we have is our own immune system. So shutting it down is not an option I am prepared to take long term. In fact I do all I can to help boost my immune system to fight it. I am not against the use of steriod's, but I would tell people to keep them for more serious situation's like stopping the swelling of the optic nerve of your eyes when the Sarc's attack's there or if it goes for the brain. Having said that of the brain I don't know what happen's there, that is why I told Hannah to listen to her doctor's and also track the pattern of the symptom's as well so she can determine through the year's along with her doctor's how best for her to control it. I will say the same to you as regards tracking the symtom's. The doctor's all say that it just goes away, but in actual fact it just goes into a dorment stage of inactivity which makes everyone think it's gone. Don't ever be fooled by it, if you have a safe haven like I have in my lungs where it can incuebate with out hinderence. Then you will never get rid of it.
Basicly what I'm saying is learn how to live with it, and yes insomnia is another symtom which I found to be caused by the night's of agony from the pain and the fever. The Sarc's does mimmick Artheritis but it isn't, it just feels like it.
I know that from your post you think I was being harsh in some if not all of my comment's to Hannah, but alas I wasn't. I was speaking through bitter experience when I said don't rely on other people to be there to alway's help you, because to them they can't see what's wrong so start thinking your a hypocondriac and walk away. I would never want to see that happen to another sufferer, especially a newly diagnosed one. In the early day's for me I lost a lot of my friend's through this, but what made it worse was my mother doing the same and she's a retired nurse. I'm not bitter about it as it's hard to watch someone wreething in agony unable to do anything, no-one likes to feel helpless that's why they walk away. It's not your fault that alot of people can't handle seeing their friend's or family in excruciating pain, and equally it's not their fault either we're all just human. Though you will get depressed about it, I know that I did for a long time. Well now that I've bored the hell out of you I shall take my leave and wish you luck. Regards Annie.

[Kathleen Marie]

HI, I WAS DIAGNOSED ABOUT 12 YEARS AGO.

I TOTALLY UNDERSTAND HOW YOU FEEL. ASK ANY ??'S YOU HAVE AND I WILL BE
GLAD TO LISTEN. IT IS EXTREMELY HARD WHEN THIS DISEASE HAPPENS TO YOU AND
THERE IS NOW OUTWARD SHOWINGS. BUT, I KNOW HOW THIS CAN MAKE YOU FEEL
AND I DO UNDERSTAND. I HAD A LUMP REMOVED FROM MY BREAST AND IT WAS
SARCOID AND I HAVE SARCOID IN MY EYE TISSUE. I ALSO HAVE IT IN MY LYMPH NODES,
AND IT WAS IN MY UTERUS, (THEY FOUND THAT OUT WHEN I HAD A HYSTERECTOMY.


ANY OTHER QUESTIONS? JUST ASK.


SINCERELY,

KATHLEEN

[lumpy]

Hi everyone,
Thanks for everyones replys and support. Its been a while since i've been on here. I'm really struggling at the momement. Starting to feel that my life is over! Just got some questions for anyone that answer them. When you went on steroids did it aleviate the symptoms signifigantly? It does'nt feel like they've done anything its just as painful. When you have "attacks" wot does it feel like????? Wot symptoms do you get? How long has anyone been suffering before they have any relief from the pain? Has anyone ever taken any other medication for sarc? Either pescribed or alternative that has helped? Just wondering wether there is a different route, other than steroids? I feel really depressed and alone, feeling hard to get out of bed and go to work. Is anyone elses work affected? They don't really understand and i'm sure they think i'm making it up. At the end of my tether. Would be grateful of anybody's opinion and advice.
Hannah xxxx

[Stage1]

Have any of you studied the Marshall Protocol? I have stage I and no symptoms. Found on a Cat Scan for breasts (breasts are fine.) I underwent a painful mediastinoscopy and the doctors are acting like it is nothing.....oh, don't worry, stage 1 USUALLY goes away in 80-95% of cases (dependingo n which doctor.) So, I can understand why you feel depressed. Everyone seems to think I should be joyous it is not cancer (which I am) but that doesn't take away the sadness I feel that I have a potentially diability condition. And when I ask how long it would take to get to stage 1, I am told 10 years by one Dr. and 4 mos -12 mos by another Dr.

I have read online that mycoplasm is a big suspect in one of the causes of this. I had a bird that died from mycoplasm in May (it is August now.) I am taking the antibotics because I think it was the chicken. Everyone says, keep your animals, it was not caused by the animals or the hay! Yet the literature says agricultural exposures are one of the causes of sarcoidosis.

What do you know about the antibiotic treatment? Thanks!

[rsmdunn]

Hi everyone. I was diagnosed with sarcoidosis about 9 years ago. Because I take coumadin for a hypercoagculative disorder, docs have pretty well written me off with regard to treatment. I'll never forget the first rheumatologist I saw who told me to "live with it. Others do." The next one just confirmed the diagnosis and said that there was really nothing I could do. I've had lumpectomies on my legs and arms and back and I told my PCP I refused any further cutting! I try to avoid pain meds as I am trying to save them for the really bad times. I get pain in my inner thigh leg muscles that nearly incapacitates me. It's hard lifting my legs to get dressed or into a vehicle. The ankle stiffness/pain has been greatly relieved by my new hot tub. It helps with much of the 'arthritic' pain. I do better in cooler weather with regards to the swelling - but I have one foot that normal shoes don't fit. Had to give up my cute little pumps! I try to maintain humor - but somedays its tough. The sharp and sudden pains are hard to describe to others. Even my nurse hubby has difficulty with the issues stating that his mother had sarc in lungs which resolved. Well, it took the new AMA list of symptoms last year to show both my doc and my hubby that all my weird and seemingly unrelated symptoms were valid. But it still seems that relaying all to others is frustrating to myself and all of you, too. Whew - sometimes I think it's just me! It reminds me to take some time to see my doc again. After too many years of fruitless testing - to be followed by the big write off - I've rather given up on treatments via conventional methods. Hot tubbing, hot waxing for the hands and feet, cool packs and prayer. What a combo! The liver is causing problems again, though - so it's time to address issues again. Sigh.
Being in healthcare myself - I see so many people who are worse off than I - so I usually just deal with stuff. But days like today - I can really feel sorry for myself! Am glad to find a site to learn more. There are new treatments and more validation exists. So blessings to you all! Ruth