Thank you for your responses. It was good to see the reactions as you itemized them AnnieB3. I'd never seen it done so clearly. In reading another post this morn under the muscle biopsy post she remarked about staff saying her body reacted like that of 'an old person.' I have gotten that too. One of the first big reactions I had was like that. It it truly frustrating to me that I am not a 'more standard' patient when it comes to meds. I wish so much I was.

I am relieved to report that I have not had the same thing happen in the past 2 days. Thank Heaven. My breathing is so much worse and not recovering the same so I know to be super gentle, let my daughter know what is going on and rest 24-7.

My pulmonolgist is aware of what is going on and I have his direct number ( secretary) and was put thru fast last week with just the mestion of my name. My pulmo is just as frustrated by my neuro. I told him (lung guy) after IU talked my neuro that coming down to the university to jump thru hoops for her (neuro) given she has such an insane bar for it it not worth my health. He (pulmo) and I have discussed what needs to come next and that will be done with the new neuro Nov 2nd and the following weeks. I need to commit to the muscle biopsy which I am now OK to doing as long as the new neuro will see that a) it gets done correctly, and b) gets read correctly. I absolutely have no trust in that happening with my current neuro. I did my research on biopsies of this type and these elements are important.

I have Lifeline now and told my pulmo this tho he stressed DO NOT let it get that bad before you come. He is worried.

About reactions I think only 2 of the long list of medications on my list for docs are true allergic reactions which I say if given the opportunity. My list frustrates nurses and docs. I am allergic to Depo Provera and an antibiotic I taken over 10 years ago. I have valiium on my list and the oral surgeon asked me about it but was understanding when I said it wasnt the base drug it was a binder/additive thing.

Annie59