Sarcoidosis Support User Group
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Welcome to the sarcoidosis support group, a place where sarcoid sufferers can go to discuss symptoms, diagnosis and treatment in any stage of the disease.

Founded by mygoode on October 4, 2010
31 members
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I'm going to try and keep this short; sorry if I ramble. I have so many questions because I've had 2 doctors suggest I may have either sarcoidosis or amyloidosis due to some rare heart rhythm issues (malignant ventricular tachycardia).  I started reading and I have alot of symptoms, but I know those symptoms can be from a multitude of other things also, I have so much wrong with me it's overwhelming sometimes.

I went through all of my doctor's notes and info and made a list of symptoms and dates etc to take to my dr and I'm wondering if I have Sarcoidosis.  If so, how do I get a diagnosis? I know it's rare, so getting a dx may be difficult and I can't have an MRI due to my ICD.

11/8/1997 Group B streptococcus, which caused blood sepsis
1998 - Hypothyroidism - treated with Synthroid;
12/9/2004 Enlarged Liver, which was diffusely echogenic [normal blood test & cholesterol];
11/28/2005 – Baseball sized lump under left arm [sonogram was normal] the lump comes and goes; shortness of breath; chest pain
3/15/2005 all of my female organs were enlarged and they did surgery to find a cause [endometriosis was found]
3/13/2006 shortness of breath upon exertion
3/31/2009 patchy hair loss - 4 quarter size spots found by the lady who cuts my hair
7/26/2009 Cardiomegaly of the heart and Vascular crowding on Xrays and CT;
7/26/2009 Right Hemidiaphragm slightly elevated, different parts of my heart inside are enlarged such as left ventricle, left atrium, septal wall.
8/28/2009 Cardiomyopathy - heart muscle damage

I've been told I may have both Diastolic & Systolic heart failure after testing I had done in 2009 and I had to have a Cardiac Ablation, Tilt table test, Cardiac MRI & Catherization, then had a pacemaker/defibrillator implanted.

Does anyone have Cardiac sarcoidosis. Did you have both diastolic & systolic failure?

I've been reading through posts and some of the symptoms such as headaches, pressure in the eyes - like my eyeballs are going to pop out and my vision changed about 3 months ago making most thing blurry, coughing but not sick, more like I have a lump in my throat which comes and goes and my voice will be horse sometimes for no reason, night sweats, severe fatigue (I wish I had appetite loss!); swelling in my legs and I started getting these little reddish purple spots on the front of my calves that go away after awhile but then turn a brownish black when they do.

MPatterson thank you for the links you put on another post - I found a picture in the wikipedia page [systemic sarcoidosis] that looks exactly like what my skin goes through...I just thought it was adult acne; even though I never had a problem as a teen or before 1997.

I really don't want to have this and I feel terrible for those of you who do - what I've read you're going through is horrible and I hope you all find treatment and relief of your symptoms.
1 Comment
as a followup, I talked to the dr in the expert forum again - I think he missed the part about me having a Cardiac MRI - which would have almost definitely confirmed a dx; testing was inconclusive but nothing was 99% chance that I don't have sarcoidosis or amyloidosis but I'm still going to mention this to my dr.
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