The last week of nights and mornings has been something I hope I never repeat…ever, ever again. I hope that starts with tonight. So far each night has been worst than the last. I think I came awfully darn close to being dead last night. I cough and choke to the point of starting to pass out. The middle of my chest rattles, I cough the crud up my windpipe and then I cannot get the gook out. Last night was super scary. All I could think of is this is how people with MG die. I had very little breath left….in or out. That’s when my throat started swelling. It was very obvious by looking and obvious because air was just squeaking through. Good thing I have spent most of my life practicing being calm in those situations. It took a few hours to unswell my neck in the middle of the night. I spent more time sitting in the chair than snoozing in the bed.
The first morning I coughed up blood, I was freaked. Now I cough up blood morning, noon and night. The nurses don’t seem bothered that I am coughing blood. OK. At this point, the biggest stressors are not enough sleep and difficulty breathing.
I felt yucky from morning until around 1 or 2 PM. Then suddenly my breathing was better, I did not need to run to the bathroom any more and some of the weakness went away. I went to Trader Joe’s and spent the rest of my SNAP. By the time I got home again, I was seriously dragging my butt. I put the food away and then today’s nurse showed up. She was here about an hour.
The nurse got an eye and ear full. My voice fluctuated up and down the whole time. So did my eyelids and my facial muscles. She said it’s obvious I have MG. An ironic thing is that she teaches nurses at the big hospital near the evil neuros. I often think about the dermatologist at the big hospital. He was more worried about my broken voice, butterfly rash and MG symptoms than anyone. I thought of that derm doc even more today. The nurse took a pic of my lipodermatosclerosis leg. She traced the deep line in my leg fom the bottom of the furrow to where the scar is at the top left. Now that I have seen the pic, felt the trace and talked to her, I am scared/baffled/amazed that my leg has changed so much from last year.
The scar near my knee is where calcium started growing through my skin. It was labeled scleroderma calcinosis, as part of my MCTD. Ummmmmm….now the lipodermatoclerosis has connected to the old scleroderma site. What does this mean???? Looks like a big turkey drumstick. Perhaps I need to see the dermatologist again! I looked up legs with similar configurations. I need to get the nurse to take more leg pics from farther away of my leg
Today was LDS Women’s Conference. I am glad it wasn’t any longer than an hour and a half. I liked President Dieter F. Uchtdorf’s talk….‘A Summer with Great-Aunt Rose’. With my headache and ear aches, most of the women and the young women’s choir were too high pitched for me. They made my ears feel like they were bleeding. My ears hurt so much that I don’t remember most of the conference. I need to listen to it again someday when I feel better.
For those of you that missed it, my IVIg was denied by the judge. Here’s what I wrote to my MG support group…..
Here is a paragraph from the judge’s denial of my IVIg. “Providing medical care requires a balance between giving patients the treatment they need and having the resources to pay for those treatments. Medicaid has the additional responsibility of putting tax dollars to the best use possible. This case illustrates a tension between a patient wanting treatment that has helped her in the past with the payor’s need for objective evidence of a diagnosis before the requested treatment is funded.” She listed a Utah statute that allows health care rationing.
The judge got years of medical records from my past neuros about my diagnosis and treatment, including years of IVIgs. She gave the most weight to a guy who was never my doctor….I was just sent to him for SFEMG testing. He’s the one who spent 10-15 minutes doing the SFEMG, never tested my eyes and admitted I have ocular MG….but told the judge no doctor would ever prescribe IVIg for that! She also discounted my good Utah neuro because he only gave her evidence of my myasthenic crisis, 5 emergency IVIgs in the ICU, and that I got remarkably better with the infusions….but he did not come to court. My lawyers never asked him to, they thought the 4 page pdf was pretty thorough. I have always been seronegative. The judge interpretted seronegative to mean I don’t have MG. If any of you were to read the whole report from all sides, the inaccuracies and lies from the oppositional neuro and the insurance company would make you crazy.
SFEMG…..Sensitivity: > 95% positive in generalized & ocular MG, when the test site includes facial muscles. He said he did not need to test my eyes or face. What part of me is usually noticably drooped?
Single fibre EMG can be performed in a number of muscles, but muscles around the eye, orbicularis oculi and frontalis, are the most likely to show an abnormality. The idiot only tested my left forearm, for the shortest time possible. He was trying really hard not to diagnose my MG for the judge.
Around 10-20% of myasthenia gravis (MG) patients do not have acetylcholine receptor (AChR) antibodies (seronegative)