The left eye has been messed up ever since WNV. I think it was a couple of months ago that it hurt a lot. I have battled with extra blurry vision ever since. My nearsightedness has gotten way worse. I can read words and see details across the room just fine….but up close, without my reading glasses….It’s hard to tell there are words. They just look like a smudge. And now with my reading glasses, it’s hard to read. Very annoying. I suppose I really should see an eye doc again.
I wish I knew who to make an appointment with. Not sure if I should go back to the neuro-opthalmologist, or someone else. That doc went to bat for me and wrote a script for IVIg. He fought the pharmacy board for me. Then he got the same “talking to” as my good neuro when he prescribed IVIg. He wrote me an email that made it clear he could no longer help me. I wish someone would investigate the large neuro department that spends so much of its time denying care to women with MG in Utah. There ought to be a big, nasty story in the background….one worthy of jail time and fines for the perpetrators.
My counselor came to visit yesterday. He has been shocked all along at the hurdles I have had to go through. He is rather dumbfounded that there is still no ruling by the judge. Of course he agrees with my internist, the medical student and countless others who have said the best cure for my MG is to move….and do it NOW! The more I have thought over how adamant the med student was, the more it freaks me out. He is close to the politics of Medicaid in Utah.
I got mad at my bed last night. I rested as much as possible before tackling it. I very carefully slid off the mattress, topper and pillows. I was then able to lift the box springs enough to get it back within the bed frame. It was really hard to get the mattress back. I banged my knees and stressed the hernia, but got the bed level again. YES! I then slept like a log for 9 hours, only getting up once to pee. I desperately needed that sleep. I am way behind in hours snoozed.
I need someone to figure out why my dizziness has become so debilitating. The dizziness makes me queasy and adds to the killer headaches. I don’t have to move at all. The dizziness and vertigo just hits me. It’s wrecking more and more of my waking hours. The dizziness also affects my voice. From what I have gleaned from various docs, especially neuros, many of my problems are thanks to my vagus nerves. I am just not sure if anything can be done about it? My last neuro had info about a vagus nerve stimulator. It’s all wrapped up in the dysautonomia that has dogged me most of my life. I think that somehow the MG, WNV and subsequent GBS and CIDP have contributed to my already messed up vagus nerve and that explains the gastroparesis, dizziness, voice problems, and really…..just about everything. Sigh….. “Regular” doctors do not much think about all this being related. All my life, the back of my head has been swelling up. I knew I was onto something when a bunch of folks with CIDP kept mentioning the vagas nerve and back of the head swelling.
The ultimate irony??? The vagus nerve is called the wandering nerve. How appropriate for Wandering Wendy!
Over all these years of struggle, I have either had or docs have wondered if I had, most of these diseases. Kinda freaky.
Some place, somewhere, there ought to be a genius just waiting to find someone like me to study. I want them to make me better. Since January begins my
6th 7th decade, I suppose I am on the wrong side of the age divide for improvement in health. Sigh…..
IVIg works. Just give it to me!