Hello and thank you for the question. Answers given are for informational purposes only and are not meant to replace an exam by an in-person.
I am Dr. Sohaib, a practicing Internal Medicine Specialist and i will do my best to help you today.
Interesting question. Actually this problem is quite rare these days as there are not many physicians who have first hand experience in treating this condition.
I wonder if you have been to a university hospital for this condition?
Because the doctors/faculty working at the teaching hospitals are more up to date regarding any new guidelines for treatment of any disorder and they are more experienced in treating rare disorders, such as yours.
Mayo clinic is a nice area to consult.
You can call them, send an email and set your appointment.
Here is another useful link for you;
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