NO Granulomas??? Still DX with Sarc and feel alone

Hi, I have been dealing with a dx of sarc alone since November 08 and today I found your site. I am 35 female from Missouri, wife and mother and my sarc seems to be mild and different from things I have seen on the net. It started when I woke up one day and thought I had pink eye, after 2 trips to the family doctor, to rule out infection or scratches I saw and opthomologist who said I had "scleritis" an inflamation of the 3rd tissue layer in the eye and was so severe I couldn't see out of it. Took prednisilone eye drops but after stopping the drops the eye trouble came back. He ordered lab work, ACE, Rh, lukemia, ,lupus etc etc. He said it is typically caused by and auto immune disease and thinks I have sarcoidosis. So I saw my pcp who put me on oral prednisone 40 mg (which is making me crazy) We have tried to go down on the mg and ended up several times coming back up to 40. I am currently on 20mg and so far so good with the eye. I have never had the bumps, they can find nothing in my lungs, mouth, eyes etc to biopsy. I have the ill feeling, joint pain, fatique etc... but when I look on line it seems that everyone has the granulomas... is there sarc without these? I did see a Rhuemotologist who now has me taking indomethacin (indocin) and will be tapering off the prednisone soon. Does anyone have any experiencee with this med or have sarc without the bumps? I've felt so alone and I am trying to trust my doctors but it's been a difficult few months. I' d appreciate any insight or guidance on what I should do next. Thank you so much

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Hi!
I had what I thought was a couple of bouts with a "flu" bug last January, back to back episodes. During the first few days of being ill, I started seeing lights from the sides of both my eyes. To me that was a red flag there might be a retinal problem. Something you need to take care of ASAP. So I went to an ophthalmologist who in turn sent me to a retinal specialist. He said I had inflammation on my retinas and took ALOT of photos of my retinas along with a whole host of blood tests as with you. Mostly looking for an autoimmune disease. My ACE levels were normal at that time but in a couple of months elevated to over 300. My retinal specialist called and told me he thought I had sarcoidosis. I have been to a pulmonologist as well as a cardiologist and the lung doctor said on looking at the CAT scan of my lungs that he saw an enlarged lymph node in my chest...diagnosis sarcoid. I have never had a granuloma found either, not to say I don't possibly have any. I too have thought this odd. Even doubted my diagnosis. However, sarcoid sometimes is diagnosed on symptoms as much as anything, and I sure fit the profile as far as symptoms!!
So, I am on prednisone. At this time 7 1/2 mg daily. I also feel kind of "off" and not like myself on pred. but it does seem to help by breathing and at least I can function (most of the time) I have gained all the weight I initially lost and then some probably from the pred. I hope I will be able to get off of it soon but for now I am just glad that it alleviates some of my symptoms!
So, You are not alone!
God Bless!!!
PetLady

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kcbdeast,

Prednisone will make you feel pretty crumby. Do a web search and you will read about the side effects.

The "bumps?" Sounds like a scary movie. Sarcoidosis will present on the surface of you skin or anywhere in your body head to toe. Because you have it in your eyes and know where else... we will pray that you are blessed and have no other recurrence after this gets cleared up in your eyes.

Granulomas, can be in any organ, muscle, tissue etc. The fact that they have not found any may be because it hasn't shown yet. You may not feel uncomfortable from a granuloma or you may notice pain. Prednisone is the typical treatment. If you have more questions... ask them and we will try to help.

bigjoe

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The odd thing with me is I have been dx'd with sarc in lung and skin but they never mention my spleen which has granulomas.

Like Joe says, you may have granulomas, they just haven't found them yet. Sometimes they are too small to be seen untill they grow.

Not everyone has enlarged lung lymph nodes to be dx'd with lung sarc. There is a 3-10% chance of having lung sarc by symptoms only.

Sorry you have it in your eyes. I am having mine rechecked next month.

Take care

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I was "sick" for several years. Starting with joint pain, fatigue, general flu like symptoms, than uveitis, very similar to what you have, its just a different layer that's affected. I saw more doctors than I can remember, had more tests and it took over 4 years for them to actually see granuloma's in my lungs and lymph nodes and that's when i finally got the dx. I'm living proof you can be very sick from sarc without the nasty little granuloma's being picked up on x-rays and scans and such!

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Thanks so much for all your replies. I feel better already. It kind of makes you feel like you are losing your mind to have a sickness that no one seems to understand or no known cause. I appreciate all your replies. My docs have done lab work, and chest xrays... should I be requesting ct scans or anything? Is there anything I should be doing that I'm not already? I take 20 mg of prednisone and have cyclobenzaprine for pain. The Rhum put me on indomethacin but I don't think I am going to be able to tolerate the gastro effects of it. It makes me very very dizzy, sick to my stomach and lots of trips to the bathroom :( I think I'd rather deal with the prednisone than the effects of this indomethacin.
Thanks again for all your replies, it was very nice to hear from all of you and look forward to communication with you again.

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kcdbeast,

I am not a Dr. and I do not have medical training so please read what I say as friendly speculation and advice.

Did you have the following symptoms before Prednisone or after?

"I have the ill feeling, joint pain, fatique etc..."

Most people have an MRI of the head to look for lesions and or granulomas in the brain. Some will have a lumbar puncture. Because your sarc seems to be isolated they may not feel compelled to do more tests and they are following a typical treatment regimen. Do you have any unusual swelling in your face (excluding the normal prednisone "moon face") on one side or the other? I would keep an eye out for unusual skin anomalies to watch for possible skin sarcoid.

I would recommend you get a copy of the diagnosis from the Ophthamologist that includes the probable Sarcoidosis of the eye. It may be of value 2 or 10 years from now if some other mystery symptoms pop up. I know that sounds negative, but it seems to be the ugly fact of this disease.

Most Dr.s will only give a probable until they get a biopsy of a granuloma because treatment is longterm and severe for a chronic case. Hopefully your's will not be chronic.

bigjoe

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kcbdeast,

I had went to several Drs with most of the same complaints: severe fatigue, all over body pain, weightloss, and then when I started to get small red spots on my upper thighs I was finally referred to a specialist for a muscle biopsy. I do not have sarc in my lungs so at first the Drs. were not even looking for that and I had only a couple of labs that were questionable.
I was finally diagnosed when the muscle biopsy results showed granulomas, that was back in May 2007. As of today I was told I have sarc in my muscles, joints and skin. I do see a Neuro-Ophthamologist every 3 months due to induced secondary glaucoma brought on by high dosage of Prednisone. Never showed any signs of inflammation in my eyes and now that I'm down to 6mg of Pred a day my eyes are fine. I also take 20mg of Methotrexate a week which I seem to benefit the most from. I did have a MRI of my brain to rule out lesions(since I had some dizziness) but thank goodness it came back normal.

Hope things get better for you soon
Take care,
TeresaK

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Hi, kcbdeast. High pressure in both eyes during a regular eye exam sent me to an opthamologist. After treating me for glaucoma for 4 months with me complaining of eye pain, double vision, fuzziness& etc....he sent me to a retinal specialist....who sent me for blood tests....which led to a diagnosis of auto-immune disease. It wasn't diagnosed as sarcoid for 3 years. When I look back on the progress of the disease I will say this. It is your body. You know it better than anyone and if a doctor doesn't listen to you...find another. I am legally blind in my left eye because the infection was not treated by the first doctor and I have scar tissue. Did I say listen to your instincts. Good Luck Carosu

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ME ME ME! I am a "inconclusive" sarc. I had so many tests last year that I am surprised I don't glow in the dark! My biop only showed "severe inflammation". It wasn't till I got some shrinkage of nodes on yet another CT that I was finally diagnosed. At that point I was already on treatments even if I wasn't offically diagnosed. I don't have the "bumps". No high ACE. No grans found in any area. But I have it in my liver, lungs, nodes and sinus. Sarc is kinda a personal disease. They broke the mold when they made you! LOL! In other words, no one has the same exact symptoms. I understand your frustration and confusion. I have been there. It is like living in limbo, not knowing what direction you should be going. Wanting to hear those offical words and yet not. So...you are not the only fence sitter my friend! We will hang out together.

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Guess I belong here too. My symptoms suggest sarc. My pathology suggests sarc. But imaging does not reveal those granulomas doctors want to see. On the flip side, there's no other plausible explanation for the D dysregulation and the up and down ACE or all the bizarre symptoms. So I have to hang out on the fence as well!

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I have been treated with Pred (50mg/d) from May - Nov. Lots of cottonballs in my lung xrays. In Aug I was finally told I had sarc by my specialist but my family doc disagrees.

I never did a biopsy because things were improving. I am sched. for a MRI for heart issues and that will determine if I had sarc or not. Now my lungs are clear.

Why? ... no idea. Answers none. Lots of guesses though

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Hi there,
I have been diagnosed with sarcoidosis and haven't had any granulomas either! I'm glad you asked this because I was wondering the same thing. At first I thought my doctor didn't know what he was talking about or he just diagnosed it as sarc because he was tired of every test coming back as negative. I have had so many of the same symptoms as everyone on this forum, though, so I guess sometimes the granulomas just aren't there or aren't big enough to see.

PetLady, that's so interesting, I had the same problem with seeing lights from the sides of my eyes. The ophthalmologist I saw told me that's normal and it's just "floaters". That's a little hard to believe when I didn't see any bright lights on the sides at all before all of the other symptoms started! The prednisone seems to have helped that part go away but I still have a lot of eye problems from the sarc. My vision has gotten so much worse. I used to have pretty good vision and had a very light prescription that I used only when driving. Since the sarcoidosis, though, my vision has gotten so blurry and I pretty much need to wear my glasses 100% of the time now. I also have a lot more sleep in my eyes than I ever did before. That's a pretty minor thing, but it just seems unusual that there is more sleep build-up than before. I feel like I always have a little bit of gunk in the corners of my eyes now, which I never experienced before. Has anyone else noticed that at all?

My main symptoms show in my joints and muscles and in my body swelling up. The prednisone has helped me with those symptoms but the vision is still bad. I also have weird leg aches and pains that feel what I would imagine restless leg syndrome would feel like. Lastly, I have some areas (especially my left upper back) that feel like there are bugs crawling under the skin. It isn't painful but it's the weirdest feeling! I wonder if that might be permanent because the prednisone hasn't helped at all with that feeling. I've tapered down to only 5 mg a day now and next week I go to taking that every other day. We'll see what happens. Hopefully the joint problems don't come back because I'd rather be on the prednisone than be in that pain. What a weird disease this is!

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Amanda,

I too have developed "sleep" ;) in my eyes. They are continuing to get worse. The blurriness and diplopia is a bummer. I am glad that it is not worse than it is. Yesterday was a rip. I made it through the whole day without pain meds., but strictly from bull headedness. I am trying to save my liver for now. My vision is continuing to deteriorate. And that scares me more than the stabbing ghost pains I have all over my body.

I have the skin crawling and tingling stuff. I have Neuro-Sarc and wonder if a lot of the chronic folks here do not have at least a little of it. My little girl is 28 years old and it would break my heart if she got this crap. I've put you on the top of my prayer list.

Blessings,

bigjoe

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Hi i had many problems last year in april with my eyes but i had the Granulomas, lumps above the eyes had biopsy. since i had the prednisolone the lumps came down eyes was much better.stopped pred- they went but three months after there is a really fine lump.you are taking prednisolone you should take Ranitidine tablets to protect your stomach if your not taking them.you may not feel the lumps because you have it mild but they can be anywhere in the body .you shouldent stay on pred- for to long because they can damage your body over time.i can imagine how you feel.with sarc- it can flare up at any time but then you could be fine.eat healthy &fruit.every day this may help.

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hi i have had joint pains aswell etc/ skin. thats the sarc it can afect many people in many ways. please feel free to reply any time you will see my journal.take care

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I get the "skin crawling" in my legs, especially when I first wake up. This goes along with feet and leg pains and restless legs. It's grose! I have been diagnosed with sarcoidosis but I suspect the "skin crawling" might be signs of neuro-sarcoisosis. Hope I'm wrong!

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Thank you to all of you for your replies. My computer crashed and I am just now able to review all of them and reply. I am starting a new discussion since this one is so old. I look forward to talking with all of you.

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Don't feel by yourself. I thought I had pink eye 16 years ago and let it go till finally I could not touch my eye lids.
After going to a eye Spec I found out I had Uveitis (inflamation of the Cornea) It took 6 months on Pred-Forte to get rid of it, then this gave me early Cataracts and had them taken out of both eyes. Eye Dr said I had to go to a Spec, well one by one they kept sending me to more Dr's 7 in all I think Finally Pulmonary Dr at Barnes said I had Sarco but I don't have the lumps I have terrible fatigue, gerd, Terrible cough night sweats and then cold sweats where I am freezing. Just spend Easter Sat and Sunday in bed.
Wish there was some kind of cure. I was on Predisone but it made me crazy????

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Petlady

I started out going to eye Specialist I still go to A Retina Dr every 3 Months As I have what they call a Wrinkled Retina I started out with Uveitis then one Dr after another. I have had it for 16 years and no lumps on Lung but many years ago I had 2 collapsed lungs in high school 55 & 56 and then Lung Surgery in 1964 I think this might have been a start of this Sarco even tho the Dr's don't agree with me. I never smoked but have had a lot of lung problems. The fatigue is what drags me down for usually 2 days at a time
We just have to live with it and when I get tired my family knows I go to bed.

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WOW never thought about skin feeling like you have crawlers. I have it every night and during the day just thought maybe it was just dry skin or something.
This Sarco is so wierd. It effects all of us in so many different ways. I had knee replacement 2 years ago and that was blamed on Sarco and of course you know how our joints hurt.
Take care
Wonder if there are more people with the skin crawling???? I just never connected it with Sarco
Oh my goodness another thing to worrky about HA HA

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