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Sjogrens Topics => Living With Sjogren's => Topic started by: SjoDry on May 01, 2023, 06:03:34 PM

Title: Finally..A Diagnosis
Post by: SjoDry on May 01, 2023, 06:03:34 PM
I finally received the Mayo Clinic results. I have a nasty, hard to get rid of, Disease called: Mycobacterium Avium Complex.(MAC Disease) The worse part..is that I have been hanging on..desperate for an answer..and am then told I now need an Infectious Disease Specialist. When I called the Infectious Disease Office last week: One of the docs just left the practice..they said I could not get an appointment until the end of June! I cannot possibly wait that long. I then called the Pulmonologist and said I can't wait until the end of June. He directed me to go get admitted to the hospital via the ER. Really? Is this the most efficient way to be admitted to the hospital? Called my pcp's office back..they have no docs working for the next few days who have admitting privileges...so agh! I guess I am going back through the ER for the 4th time in two weeks(between my husband & myself). At least I have an answer..who knows my bowels may actually begin to work again..given any correct antibiotics.

Take care.
SjoDry/Sandy
Title: Re: Finally..A Diagnosis
Post by: Scottietottie on May 02, 2023, 04:13:27 PM
Hi
I hope you get the treatment you need - and quickly. At least you now know something can be done.

Take care - Scottie.
Title: Re: Finally..A Diagnosis
Post by: confused on May 03, 2023, 05:15:33 PM
Prayers

do not know what all PA might have.  Hospice???

Title: Re: Finally..A Diagnosis
Post by: araminta on May 05, 2023, 04:11:43 AM
It's always good to have some clarity.   I hope you get the right treatment as soon as possible.   And hope your husband is doing well.
Title: Re: Finally..A Diagnosis
Post by: Carolina on May 05, 2023, 10:29:08 AM
Dear SjoDry:

Here's what the Cleveland Clinic has to say about MAC:

https://my.clevelandclinic.org/health/diseases/22256-mac-lung-disease#management-and-treatment

This is for our members who wondered like I did, what MAC entails.

You have had so much to deal with, SjoDry.  At least you have a diagnosis, which is a validation. 

I can't imagine how you will get treatment be going through the ER.  The condition is more or less chronic, and uncommon as far as I can tell.

Please keep us posted.

Love, Elaine