I haven't posted for awhile. Life has been...well, it has been a little crazy. Since last year my muscle spasms have gotten worse, and it is affecting me differently. I don't like to admit it, but it has slowed me down. My neck is often craned to one side. My neck and back get so tight that I walk hunched over like Quasimodo when things get bad.
It isn't all bad news, though. Most of the craziness of this past year is gone. We don't have the income from me working, but I would rather be broke than struggling even more than I am. We are living at Mom's house, and in many ways it has been a blessing. Mom and Emma LOVE being able to spend so much time together. Those two are like peas in a pod. I get the chance to garden when I can, and we've been helping maintain the house.
Unfortunately, the neurologist I was seeing turned out to be not so great. She wasn't listening...and it really showed. I understand that doctors are often overbooked and have trouble keeping patients straight if they aren't looking at their records. When you confuse me with other patients at every appointment, I start to get worried. Like, really worried. The last straw was when she told me that I am having psychogenic spasms because of the stress of my husband being deployed abroad. When I told her politely that my husband was in the waiting room and worked a very safe job, she snapped. I left crying, and decided to never, ever go back.
That day I managed to get in to see my chiropractor. I actually used to see her father, and still sometimes do when she's out of the office. It's a family business with her mom managing the office. I can't express in words how awesome they are. They're the type of people that you're always glad to see. They're so patient and understanding, and I recommend them to anyone that will listen. Anyways, I did get in to see her that day. She assured me that I was not having panic attacks, that it wasn't psychogenic, and that I did need to find a new neurologist.
After plowing through the list of neurologists our insurance would cover, I decided to ask around. Luckily, my good friend's ex works for Mercy. She was able to squeeze me in to see the head of neurology in just a few days. I had a serious migraine the day of the appointment, and had to reschedule so that I didn't vomit on the way there. It ended up being a wait, but I was willing to wait.
I couldn't have been more impressed with the neurologist. I can see why he earned that position. He not only listened to every word I said, but I could tell that he genuinely cared. I can't express how relieving that is when you've been struggling to find the right fit with a doctor. The doctor decided that it would be best to wait for my Dysport injections to wear off, and to order blood work in the meantime.
Unfortunately, my follow-up appointment had to be rescheduled. The doctor couldn't see me for awhile, but I was able to get in to see his assistant. I was nervous, but she turned out to be just as caring and understanding. My blood work was slightly abnormal, and I need to work on getting more potassium and B6. Getting my potassium levels up may help with the cramping, but it isn't the answer.
The bad news? There is a chance that I have Stiff Person Syndrome, and I need to go in for more blood work. This time they are looking for specific antibodies that would show an autoimmune attack on my muscles, as well as signs of muscle tissue damage. Frankly, the idea of a progressive disease scares me. I won't know for a week or so after the tests, and I'm trying to not think about it until then. If the test comes back positive, I will probably end up on intravenous immunoglobulin treatment. Antibodies collected from thousands of blood donors would used in hope that it would flush out my immune system.
If you are the praying type, I could use the prayers. Please pray that we can find the answers soon, and that there will be a cure. Pray for the strength that I need to fight this.