I need a place to spill my guts. Congratulations, you've found my gut-spilling spot.
About five weeks ago, I began having problems. I had a weekend where I coughed up liquid nearly every time I took a drink, had difficulty processing language and remembering what I was doing, was fatigued, and generally felt crappy. As the days went on, I began to notice a weird tingling feeling throughout my arms and legs, which made me want to tear my skin off. Right, bad weird. Then came the heaviness. My limbs felt like they were too heavy to move, like they were made of concrete. I had random pains, mainly in my limbs. And I was clumsier than usual.
About a week in, I started getting painful muscle cramps (different than the above-mentioned random limb pains), mostly in my legs but sometimes in my upper arms. The fatigue worsened to the point where I was taking naps every day. I normally cannot take a nap even if I really want to. My cognition also became worse. I also began having a different kind of tingling--the kind that happens before a body part falls asleep. It happened in three places: one time on the thumb pad of my left hand and radiating up into the thumb and index finger, fairly often on the left half of the tip of my right index finger (yes, a small area) but feeling deep rather than on the skin, and frequently down the outside of my right ankle and under my foot a few inches.
I went to the doctor. Actually, nurse practitioner. I wanted to see a neurologist. She had me tested for Lyme disease, thyroid, kidney function, and a variety of vitamin deficiencies. I was a little concerned about my vital signs, although she wasn't. My blood pressure was 140/90, my pulse rate was 82, and my temperature was 98.8. My usual vitals are 105/65-110/70, 66-67, and 97.1-97.4. I know my body, and the readouts I was seeing were not normal. The CRNP pooh-poohed my concern, chalking it up to nerves. She didn't seem to hear my explanation that I was not at all nervous; in fact, I was nearly comatose with exhaustion.
As that week went on, my cognition improved, but my fatigue did not. The painful muscle cramps got worse. Exactly one week from my first visit, I saw the CRNP again: the only abnormalities in my bloodwork were low iron stores (not low circulating iron), low vitamin D levels, and low potassium levels. She started me on a five-day course of potassium supplements and a once-weekly-for-three-months course of vitamin D supplements, both prescription. She advised me to take OTC iron pills. I did. My vitals were all still elevated: BP 130/85, pulse 77, and temp 98.6.
Over the next week, I got to know my new body better. I found that I could compensate for most memory-related tasks. Besides being a speech-language pathologist and working with patients on this very issue, I am also an extremely bright person. I put some supports into place for myself. While at the computer, I used the Stickies application frequently. I could quickly jot down who I planned to email and the topic, in case I forgot in the time it took to open the email program. I began using my calendar for things that I normally would keep in my head. If I thought of something I needed to do online after finishing whatever I was doing, I would immediately open a new browser window and navigate to the appropriate website or google the desired phrase. I used a similar strategy for writing entries on my regular blog (and on this one now) and for writing reports at work: when something came to mind that I wanted to say next, I would hit return and type it immediately, then go back to the paragraph I was working on. Maybe these are things that typical people do in their everyday lives. Not me. For me, this represents a decline from my previous level of functioning. Sorry if that sounds snooty. It's just a fact.
Compensating for word-finding and comprehension difficulties was not terribly difficult. There wasn't much I could do about them. Ask for repetition or slower presentation to assist comprehension, as well as focusing harder. For expression, speaking at slower than warp speed helped. I had no issues working with my students, because I use a slower rate of speech with them anyway. Sometimes I just had to stop and wait until the word or words were there. It didn't take long. Same with the "what did I come into this room for?" problems, which were happening often. Just wait.. oh, that's right. I never lost anything for good unless someone interrupted my waiting. Actively trying to remember did not help, but passively waiting did.
The muscle cramps, pain and insane tingles (as opposed to going-numb tingles) were more difficult to work around. These symptoms were usually not bad in the morning but worsened as the day went on. I didn't want to take painkillers, because I tend to bruise easily as it is, and I don't like to stress my kidneys and liver. Also, I have reflux (due to hiatal hernia) and don't need any more stress on my stomach. I tried taking a hot bath, which relieved the muscle cramps temporarily but sent my already-haywire sensory nerves into overdrive. I felt like I would lose my mind. Pressure seemed to help with the sensory symptoms, so I wore tight bike shorts and ski socks. No good options for my arms, but my legs were much worse anyway. I found that being cold helped with the sensory symptoms but made my muscle cramps unbearable. It certainly was a Catch-22, not an easy decision. I chose pain. The haywire nerve sensations were worse than pain.
I found that my balance was poor, I was jamming my toes or bonking my knees every day, and I was often walking on the balls of my feet. I'm an SLP. I know what toe walking is: a soft neurological sign. It is certainly not normal for an adult to begin toe walking. I could walk normally, but it was uncomfortable. It was easier with shoes on.
Fatigue became the bane of my existence. It was difficult for me to get through a day's work, and I would fall into bed for a nap as soon as I got home each day. I would still sleep through the night.
After a week on supplements, my potassium was back to normal, and my pain and tingles remained unchanged. I was now having weakness and a lack of stamina in both legs and arms. I couldn't mash a potato. Washing my hair exhausted me. I had to put the car into park at red lights, because I couldn't maintain pressure on the brake pedal through the light cycle. The fatigue was debilitating. Sometimes I would become light-headed or dizzy. Wondering if my blood pressure was still elevated, I took advantage of the blood pressure testing machine at the pharmacy: 88/66.
Then the fevers began. I guess I had had a low-grade fever off and on, but that weekend it spiked. I felt awesome Saturday morning, and I was able to pack for several hours (buying a condo and moving during all of this, joy). I think I worked for about six hours. I was tired but okay that afternoon. Around 6:00 pm, I started feeling quite poorly. I woke up Sunday morning feeling worse (generally achy) and cold. Weird cold. Familiar cold--time to unearth a thermometer. My temperature was 101.8. Ibuprofen didn't touch it, although it made me feel less achy. I liked that a lot. Good-bye, muscle pain! But I was getting hot and cold. After two hours, I decided to add acetaminophen. My temperature unimpressively went down to 100.5. I gave up on medication. It was back to normal on its own by mid afternoon. I felt a lot better. Unfortunately, it was back the next morning, around 101.6. Again, taking both medications lowered it by about a degree, and it subsided on its own after 6-7 hours.
Screw the nurse, I made an appointment with a neurologist.
Miraculously, the appointment was for the very next day. Having not worked on Monday, I really had to go in on Tuesday. I had a lot to do, and it involved traveling. Blessedly, my temperature was a balmy 97.8 when I woke up. I did my traveling, getting in and out of my car all morning. I hit nine locations by noon, at which time I also hit my limit. Although my neurology appointment was for 2:00, I grabbed some lunch and headed over to his office. Which turned out to be in the same building as my realtor. Small world.
My neurologist, Dr. Barry, listened to me. By now I was nearly four weeks into the ordeal, and I was frustrated and exhausted. And my right calf was killing me. I was so relieved that Dr. Barry listened that I started to tear up. He thought I was nuts. I think that's what he wrote in his little notepad.
Dr. Barry poked me with pins, which test I passed. He also had me walk on my heels and toes, without commenting. He asked me to show him where it hurt at that moment, as well as where the going-numb tingles happen. He tested my cognition, such as higher level language and memory, in a very similar fashion to how I tested people when I worked in a hospital.
Unfortunately I forgot to tell him some things that might be important (darn memory issues), such as the effects of heat and cold, as well as the fevers of the previous two days and the elevated and depressed vital signs. He did not check my vitals, so my memory was not cued.
However, based on the description I gave of my symptoms, he ordered two tests: an EEG and an MRI. He seemed to be ordering the EEG more to humor me than anything, because he didn't feel like my cognitive symptoms were significant. If he knew "regular me," he wouldn't say that. My IQ is within the top 99.99% of people, so even a significant decline might bring me to the above-average range. My closest coworker noticed the difference. Whatever, I'm having the EEG done. I doubt it will show anything, because again, my results will be compared to typical people. If nothing else, it will provide something of a baseline. I certainly can't pass up the opportunity to wear a stylish electrode cap.
Dr. Barry said that he doesn't want to label me yet, that he didn't want to be hasty. He made an unamusing pun on my last name and asked if I got it. Yes. I refrained from laughing because it wasn't funny, not because I didn't get it. I was too tired to laugh out of politeness. I commented that the only label I wanted was the right one, and if it took time to identify, so be it.
But let's be honest, I had already "Symptom Checker"-ed my symptoms online and had a decent idea of what this could be. Still keeping my mind open though, because I'm sure that Symptom Checker has a limited number of diagnoses in its database.
And I saw the r/o on the MRI order. Demyelination. Alright, maybe I should give Symptom Checker more credit.
I had the MRI, with and without contrast, two days later. Score! It wasn't bad at all. My patience with boredom has increased as my cognition has declined. Silver lining, right?
While I was at Dr. Barry's office, I joked, "Can't you give me a shot or something, make it all go away?" He said, "Actually, I'm not going to give you a shot, I'm going to give you a pill.
I was floored. They have pills for everything these days.
It's a seizure mediation called gabapentin. He gave it to me mainly for the haywire nerve problem. I think it's working! Or in what must be an amazing coincidence, my nerve problem improved dramatically after a day on this drug. And as a side benefit (or other amazing coincidence), I haven't needed a nap since taking gabapentin. Don't get me wrong, I get tired. But not to the point of crying and collapsing, which was the subtle way I ended my workdays before.
So that was a week and a half ago. Today marks five weeks of the new me. The fatigue has been manageable. I have changed my habits to accommodate my reduced stamina; for example, I ask my roommate to get things for me sometimes. Just generally try to conserve energy all day long, trying to head off the exhaustion that may hit. I'm sleeping 8 hours and waking up tired. Sometime I have difficulty with fine motor tasks, like writing. My temperature has been normal or near-normal the few times I have checked it. My balance isn't great. It's terrible for the first hour of each day, but that's a side effect of gabapentin. After that, it's so-so. My memory has been better, as has my word finding. I think my comprehension is normal most of the time, although it's worse for ASL. My second language is ASL, and I use it at work and at home. Word finding is worse in ASL but not too bad. My swallowing is back to normal. Still toe walking sometimes. Still having painful muscle cramps, which seems directly related to the amount of use that muscle group has experienced. So I'm managing that. Weakness is still a major problem. I can't open things like medicine containers or a bag of chips. Probably okay if I don't open chips.
I'll have my EEG in a week and a half, and I will meet with the neurologist again two weeks from yesterday to go over the results of the tests. I don't know if I'll get a label at that point, have more tests ordered by him, or have him refer me to a different specialist. Hopefully he can at least point me in the right direction. One of my coworkers thinks it's hormonal, which is possible. I've lost about 20 pounds without trying, and my acne has been quite manageable. I guess that if Dr. Barry can't help me, I could try an endocrinologist. Another coworker (who only knows of the pain symptom, because I was asking her advice as a PT on how to reduce muscle pain) suggested rheumatoid arthritis. She has RA and recommended a good clinic for it.
So that's where I am.
