Hi Nicky! Thanks for posting. I believe I can get the old scan, but my neuro told me he wants it out when I'm stable. I'm just not sure what exactly stable is at this point

Anne, to answer your questions: from what I remember I did have a few arterial blood gases done and one po2 was in the 40s. I take plenty of vitamins, including b12, so I know that is not an issue. The blood results that were constantly done just showed I was an anemic.

I was also tested for sickle cell anemia which was negative. I also saw a Hemotologist to see if the anemia or any other blood disease was the cause but it was not.

The pulmonologist did have me walk for ten minutes with a pulse oximeter attached to me and the first time it went to 85 the second time, almost a year later, it went to 78. The first pulseox is what raised concerns.

I do have a bp at home and I moniter my bp but it is usually low or normal. If I'm sick it will go to 90 over 60 because my body is exhausted, but normally it's 110 over 70.

Mayo only focused on the pulmunary and cardiology part of it since that is what everybody thought I had a problem with. So they sent me home telling me I was fine when I wasn't.

I have had an ecg and an ekg and both were normal. A nerve conduction & muscle reflux study which confirmed the myasthenia. Also, a spirometry that was normal for an asthmatic.

I do have my records packed away somewhere so I will have to find them, but I can tell you that they looked at EVERYTHING. From whether I was absorbing vitamins correctly, to pulmonary embolism, to acid reflux and they saw nothing! They even thought that it may have been my asthma so they increased all of my doses to rule it out. It got to the point that the hospital would turn me away beacuse they figured I couldn't be helped. They basically told me to live with it, oxygen and all.

It was odd because for me it just started when I couldn't breath and then it escalated from there to were my words get tongue tied, I started choking on my own saliva, my vision going double when I'm tired, etc.

I will update if either I remember anything else or find my records. Thanks for the advice!