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DrThomasMd
DrThomasMd, Doctor (MD)
Category: Oncology
Satisfied Customers: 63757
Experience:  Many years in internal medicine. Oncology is one or our sub-speciaties/I help Onc fix side effects
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Any Hematologists here have experience treating porphyria?

Customer Question

Any Hematologists here have experience treating porphyria? Having concerns for porphyria and not sure where to start. Have not been diagnosed per se, clinically, because I didn't realize onset of exacerbation of sxs. However, physician is fairly certain of Dx. Extreme cognitive impairment followed by intense pelvic pressure that is not relieved for days... Blood shows in urine, back aches, and always makes my legs ache and burn. Very miserable feeling, and for years have just thought kidney infxn d/t dehydration, and Hx of kidney stones. Appreciate any guidance as I do know it is a rare Dx, and now am realizing I am not the only one affected in my family.
Submitted: 8 months ago.
Category: Oncology
Expert:  DrThomasMd replied 8 months ago.

Hello

You have presented no indication of porphyria.

and, you can get tested to rule this out.

Porphyrins in urine and blood.

You can't diagnose porphyria by the symptoms you mentione.

Not at all.

Here is a list of tests from mayo.

http://www.mayoclinic.org/diseases-conditions/porphyria/basics/tests-diagnosis/con-20028849

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