I slept 7 hours straight! Woke up to muscle spasms. Got up, took my meds and slept 3 hours more ๐Ÿ™‚ Yes, I was wiped out from yesterday. The last three hours of sleep were less restful. Every time I moved the slightest bit, my muscles were spasming, twitching, quivering buzzing and tingling. And I mean ALL OVER my body. My legs and arms feel the worst, but that’s because they’re the biggest. Now that I am awake, it’s my entire head going nuts. There is no part of my face not having fasciculations…and it goes down my throat, making it hard to swallow.

Soon it was time to take a shower and get dressed. That was pushing my endurance right there. I took off and headed for the neurologist. It’s a loooooooooong way by power chair. It took about an hour and a half to get 2.5 miles. Google maps says 7 minutes by car.

By the time I got to my appointment, my eyes were drooped and my whole face felt like it was melting off. My voice was very, very broken. I was wicked bad weak. The doc wants me to get more IVIg. Once I get IVIg regularly, he wants to decrease my Mestinon dose. But….insurance has neither formally denied IVIg or given the OK. He will write another appeal letter if it’s denied.


The neuro had the nurse FAX a letter to Paratransit saying I have MG, am weak and need unrestricted rides. I hope that’s enough. Now all I need is $8 for each round trip.ย That was it! The neuro didn’t have much more to say. He told me to come back in a month. That was my cue to burst into tears ๐Ÿ˜ฆ A month?!?!?!?

The neuro was impatient with my broken speech, then when I cried, he escaped as quick as possible. The nurse was hot on his heals. To her credit, when I went from crying to sobbing, she came back. She told me how sad she was that insurance was so difficult. She then told me what insurance to switch to. She said the sort of Medicaid I have ALWAYS denies IVIg, but the other ones don’t. She told me about a brand of Medicaid that has never denied IVIg for that neuro. How can my crappy insurance company get away with that? What do the feds and state say?

The nurse said I had sounded so good after IVIg. Both she and the doc seemed surprised I had fallen so far, so fast. She promised that if I had questions or concerns, email her ASAP and she would give them to the doc. She said our past communication mix-up was because she went to Hawaii for two weeks. I didn’t argue. She was still there when I went into crisis. I want her on my side.

So, I have an appointment to see the neuro in a month. I took flower pics all the way home. I stopped at Whole Foods to buy more cinnamon toothpaste. I wrote to the lawyers to tell them what’s going on. I have been researching Medicaid choices online. I have been resting. I am not as sore as yesterday, but I am exhausted.

Most of my day was spent getting to the neuro, then coming home. Good thing it was a reasonably nice day ๐Ÿ™‚ The wind was whipping, but much warmer than the day before. My hair was full of static electricity and in my eyes. I had a coupon for an $8 haircut in my wallet. Guess where I went?

I told the woman that I didn’t care how she cut my hair as long as there was less of it. More of my hair was on the floor than on my head when I left. I like it ๐Ÿ™‚ There’s nothing left to get messy in the wind! Geeze! My face is red and droopy. Good thing I always wear skirts. I am going to get called Sir…a lot. And don’t forget! This is me smiling ๐Ÿ™‚ This is after resting about 5 hours. You should have seen the droop while getting my hair cut ๐Ÿ˜ฎ I showed the hair cutter my pic from February 28th. She was amazed how much different I look when my muscles work. Even though I randomly show up to get my hair cut, I keep getting the same nice woman ๐Ÿ™‚

My jaws hurt pretty darn bad from the voice doc yesterday. They don’t like being exercised without IVIg. None of my muscles feel like working. It sure is hard to breathe!