Last night I did not have enough strength to walk. It both comes as a surprise…and doesn’t. Weakness has been progressive for weeks, and was made worse by Bumex. Yesterday was the weakest I have been since going into myasthenic crisis February 2015. Just before bed, my legs gave out under me a few times. It happened fast. I was holding onto my walker and suddenly my leg feels dead, is twisted at a weird angle and is dragging.
I am sort of used to my legs giving out on me. Ever since Heather was little, it would feel like my knees could bend both ways and I would collapse. That was particularly unnerving when coming down the ladder from my loft bed in the underground house. I would not know it was going to happen. It was only at the moment of weight bearing that I fell. Well…that’s happening now.
There are several odd feelings that have been leading up to this. Both my right arm and leg have been having creepy electrical buzzing in the tendons when I stretch them a certain way. But…it’s my left leg that is most likely to give out. There is no feeling of pain or numbness, no warning. I just have no strength. I am confused. Is this myasthenia gravis? Is it CIDP? Is it the weird MS variant my last neuro suspected?
There’s plenty of MG stuff going on. My eye droops, swallowing is messed up, breathing is a struggle, my head is too heavy and I am weak, weak, weak. I just took pics to see what I look like. It was a mighty effort to hold the camera up. Now my arms feel like they weigh a bazillion pounds each. Hate that 😦 I wish I could take a pic of leg weakness. I keep thinking if I just describe things well enough…some doc can help me…but it generally doesn’t work that way.
I have been going through all the file systems in my brain, trying to figure out a way to get IVIg in Utah. For those of you who have known me a while….do you remember the SNAFU when I lived in the NY Adirondack Mountains and my neurologist was in Vermont? NY Medicaid would only accept prescriptions written by NY doctors. My neuro wrote scripts for IVIg, but I needed a NY doc to write them. I tried to find another neuro…but there weren’t any nearby in NY. My regular doc, who also worked for the Lake Placid Olympic folks, was great 🙂 She re-wrote the VT doc’s orders. I could get IVIg in a hospital about 8 miles away. But then one day the pharmacist realized Medicaid had not reimbursed the hospital for $100,000 of infusions. The rheumatologist tried to put me on Rituxin to make up for it, but the VT neuro wanted me on IVIg. I was in the middle….left with no treatment at all.
While talking to Beth and Luc, I think it was Beth who asked me why couldn’t I just go to Vermont to get my IVIgs? I thought that couldn’t possibly work….or some doc would have suggested it long ago. Imagine my surprise when it turned out to be the solution!?!?!!! If a VT doc prescribed IVIg and gave it to me in VT, NY Medicaid had no problem paying for it. How stupid was that??? Instead of getting my infusions 8 miles from home, I had to drive to Plattsburgh, take the ferry to VT and then drive to Essex. That was 75 miles and a minimum of 2.5 hours each way. Expensive for all that gas at 8 to 12 mpg in the van and for the ferry at $10.25 for me and vehicle and $4.25 for Rhett….each way. There was the time my van was busted and Medicaid paid $400 for me to take a taxi to the VT hospital. Crazy stuff! And we wonder why medical care is so expensive! It’s sometimes administered by idiots following idiotic rules 😮
So….I need to either die or get help. I don’t know what to do. It really irks me that my myasthenia gravis is not getting proper treatment. I am so low on the totem pole, that this state thinks it’s best to kill me off. I am not amused 😦 Now the political winds have shifted even less in my favor.
For how crummy I felt, I ended up doing a lot of socializing. Kissing Helen came to check on me. Then Kent dropped by to see Olive and chat. Then I gathered up what seemed like mountains of garbage and recycling and went out to the dumpsters. Next, various people kept snagging me to talk out in the foyer. We no longer have access to the community room. Bingo was cancelled. Scuttlebutt says the supreme manager over many apartment buildings has said there’s too much stealing going on.
I got a heap of new gossip today! I wonder how much of it is true? This place has become a scary ghetto 😮 Gee….and I thought it was bad before! As I sat out by the front door and watched people come in, I realized I did not know most people and a large percentage of them exude criminal intent.
My lungs have rattled most of the day. That gets me doing heavy duty coughing and choking, then hours of coughing crud out of my lungs. I am soooo worn out! 😦
This morning I had a huge pity party for myself. I sat here and had a good cry. Things felt pretty hopeless with my health so much worse and no relief in sight. I’m not any better, but I feel mentally and spiritually stronger after getting out my sadness. Also, whenever I cry, my adrenaline kicks in, so I can breathe better. I end up being grateful for the crying because I am able to blow massive amounts of snot from my sinuses. Gosh….I can hear better now, too 🙂 The Kleenex company loves people like me!