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My Mom was diagnosed a year ago. She has many symptoms that seem unrelated. But we are wondering if they could all be from the infection?
Glad i found you!
@lauriefrancis Hi and welcome! What sort of symptoms?
My Mom has a distended stomach and constant pain around her torso she says feels like shes wearing a bra that is extremely tight fitting. She's been getting very severe headaches. She can't do the slightest activity without wheezing and shortness of breath.
She's almost 83 but 2 yrs ago she was completely independent doing her own yard work, going to daily Mass and other Church related functions. Making her own meals – all healthy nothing prepackaged.
No other health problems.
Drs found slow growing lung cancer last spring in addition to MAC. She went through that surgery and completely recovered. No chemo was required.
@lauriefrancis Oh, that's rough! So sorry your mom is going through this. What do the doctors say? The wheezing and shortness of breath could be caused by the MAC or bronchiectasis. How do her lungs look in the CT scan? I've not heard of headaches or the other issues with MAC but maybe someone else will chime in here. @windwalker can you help?
The headaches started after the lung surgery
But the bloated belly is very uncomfortable.
@lauriefrancis It is tough when you think there is something more, and the docs will not admit the possibility. My cardio called me "psychophysiodystrophiac" I will not repeat what I called him. Anyway, I apparently have a "systemic" form of Amyloidosis, probably Gelsolin or similar. I have written it all down and posted online for anyone to read: https://bit.Ly/1w7j4j8 "Amyloidosis" "Amyloidosis and Old Karl". Every tissue and fluid from toe to scalp is touched and impacted. Toenail purpura, Cerebral Cortex Amyloid Angiopathy, etc. My only suggestion is for you to write it down, and ask your docs to read what you have written. If they will not, then change doctors. There are docs and clinics who will work with you instead of against you.
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