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Old 02-22-2012, 05:52 AM   #1
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Question Please help me! Is this Sarcoidosis?

I'm hoping someone will be able to help me. I am 45 years old. Nine months ago, I was diagnosed with RA and Sjogrens secondary to the RA. I am not so sure now or maybe there is some overlap going on.
To give you some background, my father has Sarcoidosis. His Onocologist found it incidentally after a biopsy was done on a calcified lymph node in his lung. About five years ago, I had a upper and lower CAT scan done. Calcified granulomas were found in the left hilar area of my lung. I also had calcified lymph nodes in my lungs. I also had pleural effusion. On the lower CT, my speen had very large areas of granulomas and non calcified nodules in my abdominal area. On a recent lower CT, four kidney stones were found and calcification in the iliac arteries. I have also been diagnosed with asthma, GERD and gastritis. I tested RF positive, high SED and CRP, mildly high CEA (8), and negative for ACE.
My symptoms are:
-swelling in both hands and feet.
-all joints hurt, including SI joint.
-dry eyes and mouth.
-shoulder blade pain that radiates to chest, both shoulders and left arm.
-weird occasional scaly rashes that resemble psoriosis on elbow and arm, this happens every summer.
-right knee peels every summer and skin underneath is purple.
-swollen tongue.
-chronic sinus problem.
-left sided facial numbness (on occasion)
-fatigue

The newest issue is that I have is that I developed an adversion to sunlight. I feel terrible when I'm in it too long.

Do these symptoms sound like Sarcoidosis? Any help anyone with Sarc. can give me is very much appreciated. Thank you

Last edited by icecreamlady; 02-22-2012 at 03:05 PM.

 
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Old 03-27-2012, 05:58 PM   #2
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Re: Please help me! Is this Sarcoidosis?

Hi iclady. My my u have alot going on, my husband has granulomas in his lung he has been in remission since 1997, w xrays done every year from a pulmonary specialist. He currently 4 about a year has severe pain in his hands and wrists went 2 a rhemotologist told him his blood wrk. Was all neg. But get this she said it could b gout! Gout u r kidding me.sent him home w gout meds. Of course he did'nt take them. Our pcp told us just b cause the blood work came back neg. That happens with ra and sarcoid tests. If u google ra vs sarcoid it gives u alot of info one two. They think its granulomas in his hands. He is a tech for heavy equipment so he kinda is between a rock and a hard place. He sees the lung dr. Next month. I truely feel for u. Your 2 youg for all this. Prayers to u.

 
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Old 08-02-2012, 03:31 PM   #3
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Re: Please help me! Is this Sarcoidosis?

I'm certainly no doctor, but have had sarcoid four years and will share my thoughts and experiences....having no ACE level seems hard to do if indeed you do have sarcoid. Plus your symptoms could be coming from Sjogrens and R.A....I'll pray you do not have sarcoid, believe me, you don't want it. Remember to breathe, to take time out of the "whats wrong with me" mindset for a few days at a time...trust me, it helps, and good luck to you.

 
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Old 08-02-2012, 04:00 PM   #4
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Re: Please help me! Is this Sarcoidosis?

It may be . I have the same sx and have a DX of Lupus , Sjogrens, and CREST. Now they are questioning this as I am having thyroid tests positive and weird skin problems.I have the joint pain and dryness ,and so many other symptoms ! God bless you and I hope you get an answer soon. Ive been trying to since 1983 . Im 57 now and think I will probably die and not know the answer.

 
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Old 08-02-2012, 04:45 PM   #5
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Re: Please help me! Is this Sarcoidosis?

There are several granulomatous diseases. I would look over your labs and see if you have had ANCAs measured, a test for Wegeners granulomatosus, uncommon, but so is sarcoidosis. Not everyone with sarcoidosis has an elevated ACE, sometimes it is just upper normal range. The best bet for a definite diagnosis is a biopsy of a granuloma, if you have one on the skin anywhere, that is perfect. People with Wegeners usually have major sinus problems. An enlarged tongue could represent amyloidosis, another zebra, but worth considering. I'm sure you have had TB and histoplasmosis skin tests? I would also get tested for lupus, as sun sensitivity is a major complaint. Psoriasis can cause arthritis etc, and some people have a combo of all sorts of autoimmune, rheum conditions with a diagnosis of mixed connective tissue disease. This is a tricky area of medicine, even for the Drs who practice it.

 
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Old 08-02-2012, 06:40 PM   #6
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Re: Please help me! Is this Sarcoidosis?

Thanks ladybug for the great information. You are so right ....these diseases are difficult to diagnose.

 
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Old 09-18-2013, 10:28 AM   #7
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Re: Please help me! Is this Sarcoidosis?

Hello everyone!!! I sure can relate to all of you!! I've been having things going on with me for a couple of years now and just because all of my blood work comes back normal, my doc says there's nothing wrong with me. The one day he had me crying in his office because he told me it was mind over matter. A couple of years ago they were thinking i had MS because of the numbness i was experiencing( just on my right side). And gait problems as well. And again, just because the brain MRI came back clean, well they dismissed everything and said pretty well said your fine. And all along i've been having a persistant nagging cough that my doc said is asthma because my chest Xray came back clean. I've had this cough now for over 3 years. Now my right foot is completely numb. I can't balance at all on that leg. I wake up in the middle of the night just soaked in sweat. I get such awful spasms in my hamstring on the right side of my body and the muscle jumps in that same hamstring. I approached my dr one day and i said to him that i think i might have sarcoidosis. And he looked at me as if i'm some hypocondriact and said no you do not have that. Which i don't believe him because of what i'm experiencing every day. You wonder what a person has to go through in life before these drs wake up.

Last edited by dani36; 09-18-2013 at 10:29 AM.

 
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