Thanks both of you, I am just still trying to function and focus on everyday tasks, I see a new doctor tomorrow, and he will talk to me and he will have a lot of explaining to do because I am going to be asking a lot of things and I will get an answer, his professionalism and caring attitude will not be an option for him or I will politely thank him for his time and find another one until I find one that is compassionate and smart and actually cares. I am reading everything I can find and grabbing every medical record I can get my eyes on, so I appreciate your suggestions. I work in a hospital, I will leave it at that as I would like to keep my insurance, and I have a few degrees, so they are going to behave appropriately now that my migraine and my vomiting have subsided. And then I am going to be asking some very serious questions as to why no one acts like they have ever heard of MAC while the prevalence is increasing astronomically and it is mutating faster than British moths in the industrial revolution, where is the research, why are the "tests" so inconclusive, why are you not using an EM, why are you not looking at genetics, every article a new question and I want an answer. Right now I have one for anyone that has an answer. My symptoms started with my stomach, well the ones that sent me to a specialist about 2 years ago, I attributed my coughing etc. to my major allergies to everything. I have read the GERD posts, I don't know if I have GERD maybe or is it just that I take so many GOODY's because my stomach cannot break down the coating on most NSAID enteric coated to protect my stomach, but that would be called "drug-seeking behavior" should I ask for a simple little mild tramadol or meloxicam for my sinus headache, where have all the doctors gone?, crazy?, a patient is probably in their office because they are in pain and they would like that fixed, DUH. Never mind, another issue, i'm sure. But they did accuse me of probable GERD, I have read every single word, many times now. But this is my worst symptom, I am swollen up like a water balloon! It actually hurts.
My legs, ankles, feet, stomach, chest, arms, It started with abdominal swelling then moved to thoracic. We are talking I can only wear leggings and maternity type dresses or tops and loose boots or flip flops. My waist can be 30 when I wake up and 46 at 5 PM, I have to take my bra off and but on an undershirt or XL sports bra, and the leggings cannot have seams or they cut into me, socks leave huge indentations, it hurts to squat to pick something up because the back of my legs are so swollen, and I can't bend over, it feels like I am nine months pregnant. I gained this 32 pounds of "weight" in 2 months. It is not weight, because it varies throughout the day. Some days I am actually skinny as a model, and fat as Humpty Dumpty the next. I was a size two, now I am about a 14. The two doctors I complained to about this, my chief complaint in my mind, they have turned into what seems like a narcissistic fashion statement in my medical records. This is not fashion this is illness. If anyone has not read every single word of your medical records, office visit summaries in particular, I really encourage you to do so.
Do any of you also have this issue?: Thanks so much!

<br><br><br><br><br>Hello, I have read that MAC can affect the stomach. Mine, I don't think <br>has. I never have cramps or anything, but, I have wondered if my intestines are <br>not absorbing nutrients properly as I have lost a lot of weight. (22 lbs) <br>recently gained 8 lbs back. Hopefully some others can jump in on this. I am <br>there with you on just trying to get through every day tasks. For some reason, <br>it takes longer to do things. Hang in there. Hugs! - Terri M.<br> <br><br>

Hello @ijustdontbreathewell -- do you have a good primary care doc -- internist or family medicine doc? Any good doctor would be concerned about someone gaining 32 pounds in 2 months, and would check for things other than 'retaining fluids'. A thorough exam & work-up would be in order ASAP, not by a pulmonologist or infectious disease doc. NTM or MAC doesn't present these type of symptoms. Something is causing you to swell up, retain fluids, etc. and that could be many things. I have had several friends & acquaintances who suspiciously have unexpectedly gained weight, thinking fluid retention, and it was tumors growing undetected. I hope to read soon that you've seen an excellent internist who is following thru on your situation. My very best to you. Please report back to us.

A good internist will have answers so you mustn't stop until you find one, difficult as I can imagine that is right now. Sounds like one of two things: auto-immune disorder; food, medicine, or other allergy. This may be a stretch but check it out: https://patient.info/health/angio-oedema-leaflet

Quite possible...recommend seeing a nutritionist - good one can find the answers

<br><br><br><br><br><br><br><br>Hi Paula, and thank-you for your reply and kind concern. No I usually go to the doctor when I get sick, not as a habit. However I work for a major hospital,<br> and believe me I could write a book now on how not to treat patients. The first PCP they gave me literally smelled like a homeless person and appeared to be recovering from a bad night, I was afraid of him, he told me that nothing was wrong with me that I<br> was a drug-seeker. I went to the competition hospital, where I had neurosurgery for my back and a brace for my arm. Nothing wrong? Then they gave me to Internal Medicine, they gave me penicillin which it clearly states and I told them I am allergic too, lovely<br> 10 hours in the ER, next I had a new IM whom told me that ticks don’t carry disease, I had rocky mtn spotted fever and once again went to one of our satellite clinics after a friend who was a doctor in China for 30 years called and told them that she took<br> the tick off she saw the red bulls eye that there were 9 ticks and they had better get some doxy in my as soon as she arrived with me, as she can’t write in this country, they did or I would have been in ICU or dead. A good doctor is very difficult to find,<br> especially around here it seems, and I am literally surrounded by them. Today I went to a new PCP who was only interested in treating my sinus infection and my pneumonia. I will not even begin to tell you how unhappy I am with him. I asked him to please show<br> me my Xray, and to point out the pneumonia, he mis-identified it, I showed it to him, he took the laptop away, so I asked him to just answer one question, if I had this as the other CST and the report states over a year ago and it is and was pneumonia, then<br> why do I still have it, same just worse? I would not have lived this long with such severe bi-lobar pneumonia, I mean both lungs are about 50% full of something. His answer was “I can’t answer that.” They seem to have told me that my CST was normal and fine,<br> nothing wrong, and there was a doctor friend standing right beside my bed when they told us both that, witness. Ut-oh. Yes the infection is clearly there and it is MAC, there could be some Pnue in there also, but my mother and my aunt both died of MAC and<br> I am very familiar with it. But, I agree with you something else is seriously very very wrong. They had given me  an allergy medicine that can cause liver and or kidney failure, or congestive heart failure, it is daily, that is when the fluid retention started<br> and everything else, after I had been on it for 6 weeks, he said that was exactly what was going on. But their tests showed that everything is fine. Well it is not fine, and neither was my CST, which was also called fine. And some of my friends (doctors) want<br> to know about my butterfly face, my Aunt also had Lupus, and my mother and I both had/have Hashimoto’s. The Lupus department would not give me an appt. I just need to know “where have all the doctor’s gone?”  He wants to see me for a yearly physical in 6 weeks,<br> I told his nurse she can make the appt. and when I end up in the ER prior to that I will call and cancel or have someone do so for me as the case may be, I have already gone anaphylactic once in the last 6 months. I am beginning to think I will just find a<br> good herbalist or maybe a witch doctor, LOL. And yes I thought tumor, but the weight is sometimes gone, at least the huge pregnant belly, it will be totally flat for a day or so, and then 9 months again, and it varies throughout the day, and it includes my<br> legs and feet, ankles, and now arms, face and chin. I don’t think a tumor would shrink and then grow back? But I will look into that. Thanks for this email being here when I came in I really had one of the worst days of my life, everything went wrong, I even<br> lost my only set of car/house keys for over an hour, will make dups tomorrow. At least I had a kind person here for me, that would be you, and I thank you so very very much, just to have someone to talk to, I can’t tell my co-workers or my friends I don’t<br> want sympathy or anything to be different with them, and my dog says he still loves me even if we can’t go for but really short walks and not every day, that is what hurts the most, to let down those that depend on me. Bless you!<br> <br><br><br>

This is 21042(kathi) So sorry youre having a difficult time with doctors a d hospital. Im blessed to live in this wonderful retirement town with excellent caring and knowlegeable doctors. Dont give up, keep fighting them til you get answers. I will be praying for you. Im new on this forum and dont have much advice to give anyone but i've been helped to hang on when i almost gave up. The meds made me so sick i wanted to die, but after a month, im doing just fine. I drink an energy shake every day and this has stableized my weight after losing 12 pounds. Get lots of rest and let your little dog love on you.

Hello again @ijustdontbreathewell - I really feel for you . . . your post sounded so like you've had one of the worst days ever! I understand about auto-immune diseases - my father had Scleroderma, his sister had severe Lupus (from which she died rather young), etc. These can have genetic tendencies and can really wreak havoc on your system. You obviously are ill. If I were you, I'd find a good internist NEXT WEEK and establish a relationship with him/her. Get a thorough work-up and testing. And stick with him/her ... so as you get older, you'll have a good doctor that will know your health history. I've had fabulous doctors, including two excellent women internists. Do you have a teaching hospital near you? They provide excellent physicians.

I chuckled when you wrote that "my dog says he still loves me". On the bright side, you've got a good sense of humor!! Hang in there. Keep us posted.

<br><br><br><br><br><br><br><br>Thanks Kathi,  <br><br>I am newer than you so you are older than me here<br>J<br><br>I would be so happy to be a size 2 again, if the swelling would just go away, my mom was always tiny and so was my Aunt so I guess I never noticed them losing<br> weight., or perhaps they were ones that didn’t.  They were always tiny and delicate and ephemeral, and I am just the opposite fiery and energetic and athletic, well I was, now I am just tired and mean as a snake<br>J Sort of sound like one also LOL.<br>Thanks for cheering me up, I am a workaholic, guess that is why those that do so little really make me mad, all she had to say was, it’s a child, and I said<br> be right there and here I am…I expect that is the commitment we make no matter how large or small our part is in the healing?, so when others think it is the most money for the least work, 8-4, they are a number, it really ticks me off.  But I think I will<br> take your advice and go home and just curl up with my ShitTzu and try to sleep, I can always stop at the drugstore, that bloomin idiot did not even give me cough syrup and I haven’t slept for days for choking when I try to sleep, “where have all the doctors<br> gone??” I will find someone to find out what is wrong but it looks like I am going to be firing a lot of frogs along the way. At least I am learning to fight smart.<br> <br>Thanks, sweet dreams, and go eat an entire carton of Hagen Daz with chocolate syrup and nuts and fruits and whipped cream!!!! Do it so I can live vicariously!!<br> <br> <br><br><br>

@justdontbreathewell where the heck do you live?