Hello. I'm a 32 year old, single mother of 5. I was diagnosed with Sarcoidosis at the end of July. It was diagnosed via a mediastenoscopy and biopsy of my lymph nodes. My lungs, lymph nodes, skin, and joints were affected at that time. At the end of August I found out that it was now in my liver and kidneys, as well. I'd had a clean cat scan in july, so the rate of progression has me a little scared.
I had a pulmonologist but he didn't really seem to know much about Sarc. I'd been told that there was degenerative disease in my spine but he didn't think that it could be related. I have a new physician who keeps pawning my symptoms off as other things. I asked about Sarcoidosis being linked to Vitamin D levels and he said he had never heard of that. I asked for a PET scan to find out about progression of the Sarc and he says he'll only order one if bloodwork shows a need.
He diagnosed me with Fibromyalgia but hasn't given me a referral to a specialist.
I feel like this Dr. isn't up to date on Sarc information and I don't know how to find one who is. Or one who will get me the care I need without playing all of the Insurance politics. I'm scared, my friends and family don't seem to understand this. They don't get how I can be okay some days and miserable others. I have no help, no support and I'm feeling more than a little lost with this.
How do I get the Dr. to understand? To take my concerns as being valid? How do I MOVE him to HELP me? Please help me figure this out. I feel so hopeless about it right now.
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How do I get the proper care?
- By Brandie228
- Posted November 2, 2009 at 4:11 pm · 4 replies
- In Living with sarcoidosis
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- By SarcoidPrincess
- Posted November 3, 2009 at 12:19 am
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I don't know if you can change a doctors mind. The only thing I can suggest is ordering the brochure available from this website and show it to him. Maybe he'll be reasonable. If not its time to get another doctor. One who will refer you to a rheumatologist. I don't know if its worth the time to invest trying to change his mind especially when your issues are so pressing. Good luck and feel free to let us know whats up any time!
- By ozealan
- Posted November 3, 2009 at 8:38 am
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Hi Brandie,
You are fortunate that you live in Ohio, not that you have sarc or any other disease. In Cincinatti, you have the world's leading authority on Sarc, Dr Bob Baughman and in Cleveland there is a Sarc Clinic, so compared to the rest of the sarc world you have good help at your doorstep. Either option will give you more help than you are getting from your current pulm.
Cheers
- By middie1
- Posted November 3, 2009 at 10:52 am
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Dear Brandie,
Great care is what you need!!Definitely make the phone call to the Cleveland Clinic today!! From what I gather there are not many Sarcoidosis Specialists as it is a multi-organ condition. Let us know how you get on. Today may be the first day of a new journey for you, one with less pain and discomfort, more Joy and much healing. Hang in there. Middie1
- By Brandie228
- Posted November 4, 2009 at 3:56 pm
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Thank You! All of you. I feel like I have some hope now. I have made contact with Dr. Baughman's office and am in the process of doing what I need to do in order to get an appointment. It's about a 3 hour trip to Cinci but will be well worth it to see a Dr. who actually knows what is going on in the world of Sarcoidosis!!! I appreciate and am very thankful for your responses.
Help and information from FSR
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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