New Diagnosis of MAC/MAI & I'm scared

Ironic. My thumbs are giving me a lot of trouble right now. I think it may be due to increased device use; trying to maintain outside connections to people and looking for information. It feels like carpiral tunnel of the thumbs.

@hydrang3a This past fall, I had a 5 day run of a very bad headache, which I rarely get. I went to the pharmacy to pick up my usual meds and they asked me if I wanted to get a flu shot. I noticed that they asked every single person that. I should have said 'no' because headaches for me usuallyindicate something more is going on. I rarely get them unless an illness is coming on. I wasn't thinking, and I said "sure, I'll get my flu shot". I get one every year without incident. But, this time, I came down with flu-like symptoms the very next day. I could not even move a muscle for three straight days without it causing extreme pain in my skull. I did not eat, drink or move those three days following that shot. Then, it took awhile to recover from it. I don't know what I had, but it was wicked.

I too had that burning sensationfor several yrs. I was worried that I had cancer or something, but it turned out to be acid refux. My esophagus was so burned by my own gastric juices coming up my throat at night. Once I got the reflux under control, the burning went away and my esophagus healed. While going through it; I thought it was my trachea that was burning, but it wasn't.

@irene5 and @windwalker .,.i had both the flu shot and the pneumonia shots in October...got the flu in March....was told later that the flu shot is only 50% prevention effective

@windwalker @sueinmn ...Hello. I actually had 2 separate injections into my thumb back before this virus hit. My thumb was frozen in place and the 2nd injection (about a month after the first) unlocked it. It still is not great but there is a little flexibility. I had scheduled surgery but then I did not want to go through with it after the virus was starting. I am hoping it may resolve on it's own...not sure. My 3 adjacent fingers to that thumb were all triggering and with the shots and some home exercising, they are almost back to normal. Always something. The shots hopefully will bring some relief. Good luck. Kate

I appreciate the replies. Yes I have been on on the big 3 daily. Last CT showed new nodules and the previous ones are again noted but getting larger. Concerned if maybe I am becoming immune to the antibiotics and that’s why they aren’t working. I mentioned the amikacin awhile ago to a previous pulmonologist who said stick with the triple 3 because the potential side effects from the inhaled amikacin were pretty bad. I will mention it to my new doctor to see what they think. It’s a terrible feeling when they are agitated. I felt as if my lungs would literally sizzle if water was poured over them. Doctor said the same about the steroid. Worried it would make you more vulnerable to infections. Nannette- Hoping for good news for you with your CT and sputum test.

@irene5 I hope for relief, but I'm well overdue for the surgery, so it may not help. This will be my second CMC thumb joint rebuild, the right hand was done with a newer technique called the tightrope 3 years ago. Much simpler and quicker recovery than the tendon process, and it has been great. Looks like our September trip to Europe is off, so I hope to be able to do it in late summer.
Sue

@sueinmn I am sorry about your trip. Thank you Sue for the new info for me about your right hand. I was supposed to have the tendon one done in 2014, but I was still teaching and wouldn’t take the time. (I used to be a type A personality.) My hand doctor had said I would need a block because the pain is “bumpy” afterwards. I can’t have general surgery now, so if I ever am able to have my hands done, maybe that will be an option if it is less invasive. Thank you. When I had carpal tunnel surgery done years ago ( before MAC), he did several steroid shots while I was “out.” That lasted a long time. I sincerely hope you get relief! Irene

@alleycatkate Ouch! That must have been awful! Glad your fingers are doing better. irene5

@hydrang3a That must have been so frustrating for you. Did you have the high test shot or the regular one? The high test one gives your immune a boost to react. My doctor says you can get two flu shots during the year. I think the 2019 shot was specific for one kind of flu over the other. I certainly hope 2020 is kinder to you that way. irene5