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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda
Replies to "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..."
@tdrell I have just about had it with most of my local doctors. I am so dismayed, who I thought was great and caring initially, seem not to be all now. I liked him but now I think I really have to change.
JK
Tdrell, Thank you! That was a lot of work and I so appreciate it. I will review more thoroughly and ask questions of my doc. I've been told I have asthma also but I'm not sure how or why my doc came to that conclusion. I so appreciate you! Linda M
Terri, I have found in the past that local doctors just don't cut with what
we have. Even the experts have a hard time understanding and are still learning
how to treat this disease.
I am sure this goes without saying........ just watch for symptons and get
a regular sputem test.
how about marking it as spam?
Contentandwell well....it was hard for me to switch from original local Pulmonologist who was hostile re NJH and their outcomes...aside from NTM ignorance....he was thourough and nice.
Furthermore, I had to do some fancy actions to get into the one I go to now.
Tdrell
Lindam272...I would never have thought to question my asthma. It must be their routine there. The Methocholine Challenge test is done by a technician ...not complex.
A chum told me that she heard that 29% of people diagnosed with Asthma do not have it. Meanwhile I cringe to think that I spent $300 a month on the steroid inhalor Flovent and allowed more steroids into my body. Since off it....noted no difference!
Tdrell
@contentandwell .. JK, many on our Connect Forum can REALLY hear you .. SO many have had the very same experience .. sad but true .. on our Forum you will find that through our shared journey WE end up knowing MORE about our disease than MANY local doctors do .. it is a bit scary. BUT that is the very reason I stress being your OWN best advocate .. educating yourself .. doing your OWN "due diligence" .. if it is to be .. it is up to You!! Just be happy you found this wonderful Community of knowledge and support .. happy you found us! Hugs to all! Katherine
@windwalker, Terri Colleen took care of it! Plus gave me good instructions for my File Cabinet for the Future. Hugs! Katherine
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Windwalker/Terri M....amazingly the local ID Dr and Pulmonologist wanted me to immediately begin the 3 antibiotics.....I had to switch to a new local Pulmonologist who agreed with NJH That I did not need Antibiotics.... also the original Pulonologist was hostile that I had sleep study at NJH tdrell