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Good MAI diagnostic/treatment facilities
I was recently diagnosed with MAI and live in southeast PA. I want a second opinion and am wondering about maybe Philadelphia? I saw that Penn Medicine has a lung center with a Mycobacterium clinic. Any advice appreciated.
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They want to do a needle biopsy on a lymph node near my collarbone that lit up on pet scan to rule out cancer. That will hopefully happen next week. Then they want to see my CT scan that is scheduled after 8 weeks of meds....end of Sept. Doc said there should be some indication of improvement at 6-8 weeks and if none he will do a bronchoscopy, and do it right.
@janeted, Janet, what day do you go in next week? Please keep us posted. - Terri M.
Thank you for the welcome and the suggestions! Just seeing these post as I'm still learning how the group messaging board works. I made an appointment with Georgetown but can't get in until November. Inova Mt Vernon is right down the street but never thought to look at that hospital.
Thanks you for all of the postings.. I know so little and this has been a great resource. Jeanie
@jeaniet Hello Jeanie. I had a hard time figuring out how to use this this too in the beginning. First you have to be 'logged' in on the Connect site (you probably got that already) When you click on the 'view & reply tab and it brings up the ongoing thread, you then hit the 'Reply' tab. I then do a copy and paste of the person's @name in the reply box. That way, it ties your reply in sequence to the conversation. Did I make sense? Let me know if you still have a problem with it.
@jeaniet Also wanted to add that you should most def get good treatment at Georgetown; they seem to be VERY current on this disease and treatment. Can you call and see if they have any cancellations where they could fit you in sooner?