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Rare congenital connective tissue disorder
I have been dx with a rare congenital connective tissue disorder that generally causes sarcoidosis. What type of dr should I seek out for treatment. I have many symptoms similar to lupus. The brain lesions resemble MS but not exactly - dr's say - so, sarcoidosis? Is it healthier to be on meds (such as for Lupus control) or is it better on organs to not take these meds ( esp for kidneys)?
Thank you for your reply n concern. It was a neuro specialist for ran massive testing. I think this disorder would be similar to Lupus - many similar symptoms - so, I was thinking a rhuemy too since it is a connective tissue disorder. Thanks for the support.
Hello,
Do you have the name of your original condition? Were you diagnosed by a rheumatologist or other specialty physician? A few factors determine which type of doctor to see and your individualized treatment plan. A good place to start would be with a rheumy doc that is familiar with your condition as well as a consult with geneticist if your condition is also hereditary in addition to congenital.
Do you have the name of your original condition? Were you diagnosed by a rheumatologist or other specialty physician? A few factors determine which type of doctor to see and your individualized treatment plan. A good place to start would be with a rheumy doc that is familiar with your condition as well as a consult with geneticist if your condition is also hereditary in addition to congenital.
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