Today was interesting, but not in a good way. There was some good news and some not-so-good news. The bad news came from meeting my new neurologist. I liked him and he seemed very knowledgeable.
At my last rheumatology appointment I told her about a tremor in my left hand. It was new and unsettling. She said that I should see a neurologist. I was anxious about the appointment because I didn’t want any more bad news. I looked on the internet to see all I could find about tremors. It really did seem like it would be Essential Tremor, but if it was serious it could be Parkinson’s.
Between the two appointments there wasn’t any change in the tremors. They didn’t occur very often, which was a relief. But, another worrisome thing started. At first I thought that it was because I was very sleepy. I was having jerks in my legs and hips and reminded me of when I was almost asleep and would jerk. But, then I realized that I was having this happen more and more often when I was wide awake.
I took Topamax years ago for chronic migraines. It worked pretty well for me, but I also realized the nickname for this drug (Dope-a-Max) was very fitting. I got completely dumb while I was taking it. So, I’ll try the Keppra tomorrow and see how it goes.
The doctor said I had Essential Myoclonus. He wants me to have an EMG and take bloodwork and test again for Diabetes. The doctor wants to make sure that these two things aren’t connected. He prescribed Keppra to stop the jerks. I’ve heard all about Keppra “Rage” and know a family member that couldn’t take it. The doctor said that if I get agitated on the drug they will try something else. He mentioned Topamax and I almost laughed.
When the doctor checked my gait and balance I was completely shocked! I’ve done the heel-toe test many times and never had a bit of trouble. Today I had to concentrate very hard and put my hands out to balance myself. My arms shook wildly trying their best to keep me from falling. After three steps he told me to stop and come on back into the exam room.
I was pretty freaked out about my inability to walk in a straight line. I felt like I was so old and hopeless. We talked about the balance. He said it was so bad because of my neuropathy. When I was diagnosed with Small Fiber Neuropathy in 2019 I was told that it couldn’t be fixed. The Gabapentin I take is just to keep me from feeling the pain that comes.
I asked the questions again. He told me that there was nothing to be done to make it better. I definitely feel like I’m worse and the EMG will show if it is. As far as I can tell, the tests can only show something worse than he told me today. The tests aren’t coming soon and the EMG won’t be done until September.
I’ve read many articles about how neuropathy can get worse and worse. Mine may or may not, so I will try to not worry. I will try to start the Keto diet tomorrow. Stopping grains and sugar will be something hard to do, but I need to get control of my blood sugar, which is inching closer to type 2 Diabetes.
Well, I’m a nervous wreck. There are too many things wrong with me. I’m blessed by God’s grace to be able to keep living this chronic life with inner peace. Without the strength from my Lord, I would probably give up. I’ll keep trying to take care of myself and trust God, walking in His path.
@2022, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains only my experiences and opinions and is not to be taken as medical advice. If you have a medical concern, please consult your personal physician.