Doctors wont listen.

For over 11 years I have been trying to find out what I have. Ive gone to alergist, lung doctors and even a doctors hospital here in West Virginia. After many test all I get is asthma. Ive had two sinues surgerys in 8 years .The only mes that seem to help me are predisone. How do I get doctors to listen?

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The best way to do this is to ask your doctors if you ccan have a specific test. The best one that would confirm what you have is sarcoidosis is mediastinoscopy. Try this approach. It works a lot on my doctors. But I am also as educated on the subject as they are. If they ask you why you want the test- then tell them what you are looking for. Never hurts.

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what is a mediastinoscopy?

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biopsy of the lymph nodes that are behind the breastbone. Just had one 2 weeks ago on Friday.

I was out for it and the bronchoscope procedure..\

google is an amazing feature :)

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While I wait for my clothes to steam (I hate to iron- have a stack staring at me!) so I can go to lunch with a friend I've not seen in a good year or more I read this.

I think that it takes getting with w/ a pulmonary specialist who knows what sarc is. Oddly enough many do not. I was fortunate that the oncologist I saw when they thought it was lymphoma (see The Gardner's posts on some of the things one goes through, he says it well and with humour!) knew of sarc and got me on that track. However the way it was diagnosed was from a skin patch on top of my head! I thought that was a chemical reaction to hair dye (shhhh) and it was instaed sarc- heck I couldn't see it- had no idea it was purple!

Find an immunologist (see the allergists in the area and ck out if they have immunology along in their credentials. Call and see if the pulmonary folks are familiar with sarc. You may have to go to a major med center (don't know where you are in WVA). I live in Houston so doctors abound, yet I still went through a lot to get diagnosed. And but for vanity (coz my hair guy said he'd not colour my hair again til a dermatologist looked at it) I might still be in process.

I'm sorry you've had this trial to go through, it is a bugger isn't it? You aren't alone and I applaud you for trying to get info and a good doctor to help you.

best, Iona

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yes get the medeostenoscopy, at least you will have something in your file, if it's positive for sarcoid, the doctors will take you serious at least you pulmonist will, and yes do alot of studying on the disease, when I went to my primary care physician I told him I was wheezing he asked me what do you know about wheezing, I've worked in a hospital cancer ward for 10 years but he dosn't know that, he thinks I'm crazy but when he checked my lungs he ran out the room and got the enebulizer than sent me to the ER, my sister in law is a pain physician in VA she told me that doctors don't like when you act like you know more than them but to be frank we do because we take the time to learn about this disease and the symptoms, which is why i'm trying to find a specialist in my state, good luck

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Thanks so much Cheesypops for that link. It's the first time I've understood what this test really was. So glad at-the-beach asked. Now I know the next test I need to request. Oh knowledge can be a beautiful thing!

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its a drive but there are a number of specialists in the DC area including several at howard university. georgetown Johns Hopkins all have secialists in Sarc
hope this helps

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I got lucky...there is 1 Sarc. specialist in the whole stat of Geofgia, and he happens t be here in ATL. I was truly ready to go to the Mayo clinic because I have heard they have some of the best Sarcoid doctors in the world! I also got diagnosed with lung and lymph node cancer until they did the biopsy...sarc isn't much better than cancer for me. At least I survived 1 cancer, but this has hit me at a time when I can't undergo treatment, so it is spreading like wildfire...started in the lungs and lymph nodes, now have it in the spleen, sinuses, and brain, and my next visit I think I'm going to have him order a chest on my heart and breasts. This disease totally sucks, but this is a great site to get info. Good luck to you all!

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Hey guys,
What about plain ole' chest X-rays? don't they show sarcoid growin'??? Then there's Pulmonary Function Tests, giving more clues. Next there is ACE, Serum Angiotensin Converting Enzyme. Have you had this test?
ACE is primarily ordered to help diagnose and monitor sarcoidosis. It is often ordered as part of an investigation into the cause of a group of troubling chronic symptoms that may or may not be due to sarcoidosis. ACE will be elevated in 50% to 80% of patients with active sarcoidosis. Concentrations of ACE tend to rise and fall with disease activity. If it is initially elevated in someone with sarcoidosis, ACE can be ordered at regular intervals to monitor the course of the disease and the effectiveness of corticosteroid treatment.

ACE is ordered when you have signs or symptoms such as granulomas, a chronic cough or shortness of breath, red watery eyes, and/or joint pain that may be due to sarcoidosis or to another disorder. This is especially true if you are between 20 and 40 years of age, when sarcoidosis is most frequently seen. Your doctor may order ACE, along with other tests such as an AFB culture or sputum culture (tests that can detect mycobacterial and fungal infections), when he wants to differentiate between sarcoidosis and another granulomatous condition.
Read more about it here...

Paradox can weigh in as a medical professional with sarc. ALSO...a trip to The Cleveland Clinic might be a good idea. I couldn't find any info on support groups in WV, but here are 2 in Cleveland and Youngstown, Ohio. Maybe you can get info about goings on closer to your city.

Euclid Hospital Sarcoidosis Support Group
Group Leader: Ann Coughlin, 216-692-8969
Meets Saturdays every other month, beginning January from 5:30-7:00 PM at Euclid Hospital.

Youngstown Sarcoidosis Support Group
Group Leader: Pat Couchenour, 330-549-2712
Date, time and location of meetings vary.

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When a doctor looks at my lungs most say cancer thank god I have had many biopsies and no cancer showed up. I was tested for fungal infections and had none but to be safe was given the meds for it .My sister was told she has sars. Ive been fighting this for over 11 years have had to have 2 sinus surgeries and been told by both doctors they don't know what causes my problems. Have been told I have very few allergies. With my sinus problem even with over a hundred polups I don't have headaches. Prednisone seems to be the only thing that seems to help me. I guess Iam going to have to leave this area to get the right teat done .

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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