View Full Version : Anyone know anything about sercoidosis?
03-22-2010, 04:17 PM
so Ive been back and forth to my rheum the last 2 weeks and did blood work and got x-rays and everything and no antibodies are coming up to give me a DX, the only test that came back slightly elevated was sercoid. So i have to go get a chest CT scan with contrast to rule that out. But right now my doctor has me on a bunch of meds. Prednisone, Norasc, Cymbalta, baby asprin, and Amrix. I started having really really bad head pain last week and ended up in the hospital on thursday night.. i got a shot of Toprol and was sent on my way ..after i begged for a CT scan to be sure my head wasnt about to explode! Completely useless they were. But basically they found nothing wrong. My head has been hurting me of and on for about 2 weeks now and its not like any pain / migraines i have ever had before.... Its just really odd.. but i guess if its not showing up in scans then everything should be alright.. as for the pain... well i suppose ill just have to grin and bear it!!
03-22-2010, 04:36 PM
Sorry to hear whats been happening, I don't know anything about Sarcoidosis..i am sure if you google it you'll get the basics. Lupus can be a difficult Dx to make..or so they make it out to be when sometimes it is smack in their face! Just because the blood work is neg, means nothing..how well I know..lived that way for a long time. If the doc is a jerk..go for another opinion. Good luck with your testing and keep us posted.
03-23-2010, 04:35 PM
I hope your headache is better today. My headaches feel like my head is about to explode too. My rheumy sent me Imitrex, and it really helps me when these headaches hit me. This is one medication that i always keep with me because the headaches will hit with no warning. However, it knocks me out, so i don't take unless i can sleep.
Your description of your headaches sounded just like mine....hope you can get some relief.
03-23-2010, 04:42 PM
Welcome to WHL. I have Sarcoidosis. I have been dealing with health issues for 15 years on and off and was diagnosed in August 2009 after a bad flare that lasted about 4 months. The CT Scan with contrast is easy. Only thing is, you must fast first so I do mine first thing in the AM. They will prick your finger and test your kidney creatine levels & also ask you if you have any allergies to dyes. The CT Scan itself takes about 10 mins. You must strip and wear the gown and you lay down on the scan bed. Before the scan, they will give you a shot with the dye. To me, the dye always give me a rush of warmth in an area that makes me feel that I have peed my pants for a moment. The nurses tell me this is quite normal for most people. They you lay there in the bed and the put it in the scan. Your arms will probably be above your head to expand your lungs. They may tell you to hold your breathe for a moment to get a specific shot more clearly. Then it's all over and you change. My radiologist gives me a CD of all my scans to take with me to my dr's and a radiology report that same day. It's about a 20 min wait for that. I can also ask for another for my personal records. The rheumy will read the results and decide what they want you to do. They are looking for enlarged lymph nodes in your chest on the CT Scan. Depending on if they find any and also on how may they find/how large the nodes are if there are any found, chances are, they will want you to see a pulmonologist for a followup.
Have you been referred to a pulmonologist yet? The pulmonologist will run a baseline lung function test on you & might want you to go for additional testing, depending on how clear the CT Scan is. They might also want you to get your lymph nodes biopsied, if they are enlarged and you are at this step that is. The biopsy is important b/c symptomatically, sarcoidosis can resemble lymphoma and diagnostically lymphoma must be ruled out before they will diagnosis sarcoidosis. The biopsy will also help the drs know more about how advanced your sarc is. If you have to have a biopsy, you will be sent to a cardiologist and it is an outpatient surgery. The bigget thing about the biopsy is that if you smoke now, you won't be able to while you are healing, but I am getting ahead of myself.
I know this is a lot of information, and really there is so much more I can share with you, but I don't want to overwhelm or scare you right now more than you already are, especially since you might have a clear CT Scan. Sarcoidosis is an AI condition that shares several characteristics of other AI diseases such as Lupus, RA, MCTD, etc. It is a disease that, like Lupus, can have very little effect or life altering affects on the people who have it. It is so varying and misunderstood that my pulmonologist calls it the "garbage pail diagnosis" b/c it is a general series of symptoms with no explanation and no real understanding and all other specialists I have said this to agreed with him. When I first was learning about it and looked online, there was a lot of cofusing and conflicting information. It was very overwhelming and depressing and confusing to read some of what I found, but I have learned that so much of what is told is only the bad. There is so little heard about the people, like me, who continue to live with it as best they can. Please when you are reading some of those sites, know that there is hope, even if it is hard to find in some of the posts you will read.
Feel free to PM me if you have any questions.