sarcoidosis symptoms???

[fab40]

I was diagnosed with sarcoidosis in April. My symptoms were abnormal amounts of enlarged lymph nodes in my neck,(front & back),and my lungs are enlarged. I had a dry cough, pain in my chest while breathing, tightness in my chest, coughing up blood clots, cronic headaches,  general weakness. Since then, I have found out that my sinuses are enlarged also.
I had complained of my face & hip being numb & they gave me an MRI. That was fine. Now I have random numbness & pins & needles feeling in my fingertips & toes, hands & feet, this wakes me up at night, my left shoulder blade gets hot with a stabbing pain, I have had an upset stomach & heartburn from bland food for a week, dizzy & light headed, the right side of my chest hurts with inhailing & I apply pressure & it feels better. When I stand or walk it hurts again. I saw my Neurologist (who I see for Epilepsy) on Monday. I only got to explain the pins & needle feeling in my fingers & toes. He said that he only deals with seizures & I needed to see another dr. for this.
My pulmonologist said that they would wait to see if the sarcoidosis would go into remission on it's own. If I need meds, he wants to put me on steroids, but I'm afraid of the side affects. My brother was put on them for something & I didn't even recognize him. If I'm not treated, can this cause permanent damage of somekind? What are my options?

[National Jewish Health]

The symptoms you describe are consistent with the diagnosis of sarcoidosis.  One questionable exception is your "coughing up blood clots"; this has been described with sarcoidosis, in instances where there was either associated inflammation of lung blood vessels, called vasculitis, or associated infection, such as a fungal infection, in one or more of the bronchial tubes.  Given the rarity of bloody sputum with sarcoidosis, your pulmonologist might want to consider examination of your lungs with an instrument called a fiberoptic bronchoscope; it allows for direct visualization of the inside of the lungs.

The diagnosis can be made clinically in some instances, but in those circumstances where the disease extends beyond the lymph nodes in the lungs, a biopsy is indicated.

The defining pathologic feature of sarcoidosis is called, "non-caseating granulomas."  Most commonly these granulomas are found in the lymph nodes of people with sarcoidosis but they can appear in any organ in the body.  The microscopic appearance of these granulomas is not specific to the diagnosis of sarcoidosis.  They are also seen with a disease called berylliosis, caused by exposure usually in the workplace, to a rare metal called beryllium and the clinical presentation of this disease can mimic that of sarcoidosis.  It is estimated that hundreds of thousands of Americans have been exposed to this metal, many of them sensitized and large numbers with the disease.  And, other diseases can mimic sarcoidosis, including tuberculosis.  You should ask your lung specialist if the possibility of diseases other than sarcoidosis has been ruled-out.

Your symptoms suggest that you could have multi-organ involvement with the disease.  When lung function is compromised or vital organs, such as the heart or eyes, are involved with the disease, treatment with steroids is strongly recommended.  The risk of side-effects from steroids must carefully be weighed against the possibility of permanent damage to your lungs or other organs.

Good luck.

[fab40]

Thank you very much for your response. I have talked to my pulmonologist & he ordered a blood test of some kind ( which I had on Friday Aug. 29th ), and put me on Prednisone 20 MG for 2 1/2 wks. I slowly tapper off after the first week. I have noticed that when I take the Prednisone my arms and feet twitch, feel like very sharp pins & neeldes, &are heavy. I haven't called the doctor yet because I didn't know if this was normal or okay?