Recently I again declined a NIF test at the ER when I was there for the Single Breath Count of 9 event. This hadn’t been offered to me in some time. MY experience has been that a less experienced doctor will use this one test to dismiss my situation. I am supposed to do an overnight home Oxygen test. I am so sicker today. I have other Autoimmune issues and this morning my. Chest was So badly Shutdown with inflammation I was in big trouble. Sculptor 44 ..read more

Hi. New to the board, of course. I'm a 58 year old female, who has been having some issues in the last few years. It started with my eyes. I noticed that they would get fatigued real easy and it would become difficult to see the computer screen. It almost seemed like I was squinting and I couldn't figure out why I was squinting all the time. Since I work on the computer (a lot) for my job, this became an issue. I thought that it was perhaps due to not having gotten new eye glasses in awhile, but I didn't have insurance with my previous job. When I finally did get insurance, I was able to get n ..read more

Appreciate any links or ideas for how I can make it thru Really AWFUL Nights of fighting to breath, to Tolerate Severe Chest discomfort. I need more aggressive treatment and It’s not gonna happen soon. This is happening because my immune system is worst it’s been ever. And I have a Pulmonologist who believes me but I am so so sicker. Other docs like my GP are not supportive of MG and last ER trip had a young doc do so much damage I am in shock. And my arms are getting a lot weaker.. Sculptor 44 ..read more

was taken to ER by ambulance Over a week ago. I am in very new territory. I honestly was lucky I recalled out of my past Single Breath Count. I knew my chest was in trouble, my breathing. I had a secondary infection or something in chest. Also my immune system is so so weakened by problems where I live now. I can share more later. My nurse here the day of the ER and a nurse friend of hers was very helpful. But doctors only did minimum. Sculptor 44 ..read more

So moments of honesty finally with Daughter. As I am balled up in pain from Pleurisy and even cried begging her to use her Voice with Doctors to MOVE my case along. She replied if you promise you won’t get angry at me. I said but don’t you see that I am scared when my breathing is so bad. And yes it can come out as Anger. It is so hard to keep my self safe when my body is failing in new ways regularly. I had my Paster tell me once he never saw someone so patient after he watched me not miss a beat as my young daughter broke my watch clasp and I caught it before it fell to the floor while we we ..read more

With Covid and all This first contact in too long. It was before Covid . I hoped to see him but my body was failing so badly plus my ride pulled out He ended up offering a phone visit. I was so so sick that day I am surprised I managed what I did. Low Oxygen is really affecting my eyes and brain so I have to have faith in my ability to communicate under the worst of circumstances. He said he believes as he always has that it is my muscles and how can he help. I said neurology is failing me at the University. He thought another doctor was treating me and giving me IVIG. After I went to ER last ..read more

Finally got to ER on Monday. I got enough treatment to have me think of and to do things to help my situation. BUT it’s clear after the bad bad night I had I MUST NOT TALK today. I need medical help so so badly. Yet medical care in Iowa has taken a very bad turn and is getting worse by the month. Any new appointments are being blocked to Internal Medicine Department at The University of Iowa.. In December I saw my long time and brilliant doctor in that department one last time before she left and moved to California.she referred me to a fellow doctor like her. Now they won’t let me see her. I ..read more

This will take more than one post. Also given my increasingly troubled brain it’s best I can do. I think I will start with asking for ideas or resources on how people who are losing ability to talk communicate with doctors, medical folks. A big part of the problem for me is the frustrating assumption that I can always talk!! Thursday I had a call from the neurology department’s administrative head about my recent pleadings with patient advocate department for huge need for help from neurology! Recent months calls not even answered. I did 20 minutes of the high points after which she was gonna ..read more

Did a brave thing this morning. I called an excellent specialist I have seen at University of Iowa and got a Triage Nurse and explained some of my worsening situation. Then I went ahead and asked her to help me get into my first Neurologist I was assigned to there in 2008. The one who is Expert at reading bodies and put me in hospital at my 2nd appointment!. I saw my new Family Doctor last Thursday and the disaster that was was half the reason for today. Last Thursday was so very bad. I have to find a different provider to replace this new doc. Sculptor 44 ..read more

My new Assisted Living place put me through the ringer since Friday. Maybe some of this stuff is usual but with my very undertreated body it is too much. The Administrator has been ignoring my doctors letters. Now in October this left me in tears when it ended in her barging into my apartment smiling and being chatty as her partner generously sprayed pesticides all over. On Friday she decided the whole thing was gonna be the same. I called my State Omnsbudsman and told her here we go again and that she is the only one with enough power to stop this! So I won and no spray this time. She had to ..read more