New Symptoms :(

Today was rough, for sure. I had new symptoms. Or familiar symptoms in new areas.

After doing a crappy job of interpreting for an hour, I had to stop and ask someone else to take over. I hoped to relieve her after an hour of rest, but I was not rested after the rest!

I emailed my nurse to tell her about the new symptoms.

Sensory:
-Pins and needles: 4, both feet but mostly right; also right lower leg (lateral)
-Tingles: 0
-Dysesthetic pain: 2
-Paresthesias: 7, I had nasty electric shocks on the bottoms of my feet, as well as my right lower leg (running down the lateral side, toward the front) and right arm/hand--also lateral. (NEW) Oh, and in my right upper leg, beginning as we speak--down the lateral side/back of my thigh. These problems vanish after I take gabapentin, only to reappear about 4-5 hours later. So I have four good hours and three bad ones.
-Numbness: 4, increased on the tips of my left index finger and thumb. Also on my right heel, top of foot, medial lower leg, and around knee--all new except heel.
-Vision: 1, blurry when I am tired or have focused on something close (like reading or looking at my phone)
-Nerve pain: 0
-Hearing: 0

Motor:
-Walking: 2
-Sore muscles: 5, my left calf, lateral half, was killing me for a while this afternoon. Spasticity, I think.
-Fine motor: 2
-Weak muscles: 4
-Spasticity: 6, in my right leg, upper and lower, lateral side--basically down the whole side of my leg

Cognitive:
-Processing: 2
-Memory: 2
-Attention: 1
-Confusion: 0

General:
-Fatigue: 7
-Balance: 1
-Sleep: 1
-Bladder: 1
-Proprioception: 0
-Swallowing: 1, food sticking in back of throat, difficulty with thin liquids. Mild, I guess.
-A: 0
-B: 1

Emotions: I cried this morning. I cried at church. Twice. I nearly cried several more times at church. It really gets to me when I cannot do "my job."

Great Day!

Rocking today! I had close to normal energy for about an hour today. And fairly decent energy for about three hours surrounding that.

Sensory:

-Pins and needles: 1

-Tingles: 0

-Dysesthetic pain: 2 now, but I had none most of the day :)

-Paresthesias: 0

-Numbness: 1

-Vision: 2, just blurry, no double vision and no pain

-Nerve pain: 1, depending on how I sat. Most of the day none!

-Hearing: 0

Motor:

-Walking: 1

-Sore muscles: 1

-Fine motor: 3, still poor handwriting, dropping stuff

-Weak muscles: 5, legs worse than arms, right side worse in general

-Spasticity: 3, mostly in the evening

Cognitive:

-Processing: 2

-Memory: 1

-Attention: 0

-Confusion: 2, I don't know if it was forgetting or confusion, but I made quite a few gaffes today. I confused people and got strange looks and... I cannot remember what else.

General:

-Fatigue: 3, I was really dragging and would have rated it an 8 from 7:00-10:00 am, but my energy became great around 11:00.

-Balance: 0, I guess--I did not really pay attention

-Sleep: 1

-Bladder: 0

-Proprioception: 0?

-Swallowing: 1, I was cracking myself up when I tried to eat an apple. Apples are so hard to eat! You have to manage the bulk plus the juice. I kept choking on the juice. Whatever, I still ate the darned apple.

-A: 1

-B: 1

Emotions: I'm okay. I am looking forward to Friday's appointment.

Great Day

I did not have much pain today! And I sat a lot, working on my laptop on the couch--usually sitting increases my nerve pain and dysesthetic pain. I will say that I got totally worn out by a brief trip to the grocery store and took a good 30-45 minutes to recover. But then I had a wonderful evening playing games with friends.

I forgot to mention that I had another "But you look so good" from a family friend the other day. If I had a nickel every time...

Sensory:

-Pins and needles: 1, although it does get bad when I try to put my feet up, such as resting them on the coffee table

-Tingles: 0

-Dysesthetic pain: 1

-Paresthesias: 0

-Numbness: 2

-Vision: 3

-Nerve pain: 1

-Hearing: 1, just a bit this morning

Motor:

-Walking: 1, definitely getting pigeon toed. I think I need to see a PT.

-Sore muscles: 1

-Fine motor: 1, clumsy, dropping things

-Weak muscles: 4

-Spasticity: 3

Cognitive:

-Processing: 2, expressive language is rough sometimes--dysfluent in a cluttering way

-Memory: 1

-Attention: 0

-Confusion: 0

General:

-Fatigue: 4

-Balance: 2, still balance checking on walls, lol

-Sleep: 1

-Bladder: 0

-Proprioception: 0

-Swallowing: 1, I guess I will add this. Ugh, another thing to rate. Well, I definitely was having problems, especially this evening. Drink, cough. Drink, cough. I have had swallowing problems off and on since this whole thing began at the end of May. It was one of the first symptoms. I also had swallowing problems two years ago, when I was recovering from gallbladder surgery.

-A: 0

-B: 0

Emotions: Anger is the word of the day. My fuse was short. It didn't help that my sister did something she knew would bother me and said she would not do... contractors were not willing to check out an area I was concerned about... I had three separate arguments with a friend because she misunderstood and would not listen to my explanation... and collections called. Not for me; I field calls for a friend. There was a misunderstanding about a hospital bill that was paid on time but not entered in their system. Anyway, it was a rough few hours with all that. I may have overreacted to the collections idiot. Who was totally inappropriate, snapping: "Look, it is an inconvenience for me to have to call you about $25." And a sarcastic: "Wow, you paid it, congratulations." And the best one: "You get what you give."  See why I spat fire and demanded to speak with his supervisor?

Jumping Eyes. Jump. Jump.

I should have gotten enough sleep last night.. 7.5 hours... But I woke up with my alarm, not on my own, so I guess I wasn't done sleeping.

Although I was not hungry at all, I tried to eat breakfast while driving to church. Unfortunately I was gagging and having difficulty swallowing anything other than liquids. I took drinks to help me swallow the bite of food I had taken then gave up.

I went to church and interpreted for three hours. I did take a break during each meeting, when I would start to struggle. During the last hour I was really struggling--my brain would not cooperate! Then I got dizzy or something. It's hard to describe. It's happened to me before. My eyes can't focus on anything. I try but they jump around. So that makes my feel dizzy or almost carsick. That was how I felt during the last 30 minutes of church, on the drive home, and for an hour or two at home. It got better with rest. Oh, around the time that showed up, I had a stabbing pain in what I think was my stomach and LES. Probably because I hadn't eaten!

My friend drove home, because I couldn't drive after church. I was too dizzy and tired. I came home and laid down for a few hours, just talking to my sister and friend. I got some of my energy back and was able to sit up and talk with them.

Then some people from church came over. It was nice chatting with them, but I had to interpret for my friend, which was draining. Also draining was keeping my energy level up for them. So now I'm exhausted again. My legs are shaky--weak. They feel very small, which doesn't make any sense but is the only way I can think to explain it. My head feels like I have the flu. Heavy. My arms are also heavy. I'm having to go back over this post many times, because I type the wrong word and don't know it unless I try hard to edit my work. Uhhhh... This is why people don't know how sick I am, because I channel all of my energy into interacting with them. However, I can put up a good front temporarily, but I can't maintain it. If they stayed with me longer they would see that I would need to lie down (which I'm doing now).

I don't know how I'm going to work full time. Well, I do. Faith and prayer. Hopefully the doctor tomorrow will be smart.

Where Did the Good Times Go?

I woke up a few times last night and probably got a total of 6.5 hours of sleep. I got up feeling poorly, which is the way I've felt all day.

I feel shaky and exhausted. Not terribly tingly. Not too sore.

The main problem today is forgetfulness. My thoughts are gone the minute they pop into my head. I've been relying heavily on my cell phone notes app to keep track of my thoughts.

Also, I'm having more swallowing problems than usual. I cough stuff up after every swallow. But I guess it's okay, since I'm coughing it up. I'm not having difficulty breathing, so I don't suppose I have pneumonia. If I were an SLP evaluating someone like me, I wouldn't limit intake, which is why I haven't gone for an eval.

By the time I got to my neurology appointment at noon, I was seriously ready for a nap. My appointment was short--10 minutes. Dr. Barry did the pinprick thing, which I passed. Walking, which I guess I passed, because he didn't comment. My EEG showed no evidence of seizures. Hardy surprising. My MRI showed white spots on my brain, but the spots didn't take up the contrast, which apparently contraindicates multiple sclerosis. I was surprised by that, because I didn't think an MRI alone was conclusive evidence for or against MS. I thought it had to be considered in conjunction with other tests. The neurologist said that my MRI looked like that of a person who suffers from migraines. I told him that I do not get migraines. In fact, I rarely get headaches at all. He didn't comment.

He wants to see me back in two months. "Have a good summer!"

Uhhh... Wait, what just happened here?

How am I supposed to have a good summer when I can't handle heat and frankly have difficulty walking and thinking? I am barely making it through four hours of work every day. I'm going to get a second opinion. Or find another primary care doctor. I don't know that neurology is the answer, but I do know that something is wrong with me. It's been seven weeks, with no end in sight.

I hate to admit it, but sometimes I am honestly not safe to drive. My judgment is poor and I have to focus hard to manage impulses. I can't think of the right word for that. Not manage. Not control. Not cancel. But that idea. There's a word for it.

I went to the grocery store to refill my gabapentin prescription (thank goodness I get to keep taking it), and I decided to wait while they refilled it. I was afraid I'd forget to pick it up tomorrow. I survived 45 minutes on my feet in the store. I had a second wind, or maybe more like a breeze. A short breeze, which blew out after I got home. Carrying the groceries into the house wore me out.

I'm about ready to eat lunch now.

Oh, and I don't really have an appetite today. It's 2:30, and I'm eating even though I'm not really hungry.

Medical History

I've been thinking about the timeline and how I've felt. Maybe this did not start five weeks ago. Maybe this got bad five weeks ago, but it might have been around longer.

I have gone through several periods where I was weak and sickly... fatigued, dizzy, difficulty with thinking and memory. Then it would get better. I think it's been happening off and on for almost three years.

To complicate things, I've also had GI issues. I assumed those problems were related to the "feeling poorly" time periods, but maybe they weren't.

The GI issues began around the same time as my gallbladder started acting up and GERD reared its ugly head. Two and a half years ago, I had my gallbladder out, which ceased the painful attacks. Relief! But wait... things got worse before they got better. I had a rough recovery and wasn't able to work for a month. After laparoscopic surgery! I finally did recover, but I felt sickly again six months later. Maybe that was the problem that I'm seeking help for now.

Before three years ago, I was a pretty healthy person. I didn't even have a doctor. I feel like I need to defend myself and state that I'm not a drug or attention seeker. I would be much happier never to go to the doctor.

Oh, I have had one other health problem. I passed a kidney stone two months ago. That was not enjoyable.

After my gallbladder came out, although I didn't have another attack, my GI problems didn't improve. It affected my life quite a bit. When I had a colonoscopy earlier this year to try to get closer to a diagnosis on that front (which I didn't), the doctor doing the procedure asked if I was lactose intolerant. I said no, but that question stuck in my mind.

Later, I decided to try a elimination and challenge diet. Long story short, I found that I am lactose intolerant! It's ironic that I was the biggest dairy fan on the planet, only to become lactose intolerant. Sniff. Good thing for lactase pills. So I thought alright, problem solved!

Nope. Darn. Well, those blessed little pills dramatically improved my GI symptoms, but that's it. Guess the GI stuff was all about lactose. I wish I had known that adults could develop lactose intolerance. So I needlessly suffered for two years, but I was glad to have one problem solved. Little did I know that in a month, my other symptoms would be recognized as the molehills that they truly were in comparison with the mountain I would find myself climbing.

A couple of months ago, I went to an allergist, who was awesome. I don't have food allergies (lactose intolerance is different than casein allergy), but he did give me some thoughts on my medical issues. He was the one who put the final nail in lactose's coffin for me. He also thought that I might have an autoimmune problem and that I have dysphagia (disordered swallowing). He said more things that aren't accessible in my brain right now.

Dysphagia took me back a bit. And unfortunately he was right. Thin liquids, mixed textures like soups, and dry textures like crackers are all problems for me. I wanted to see an SLP about it, but I convinced myself that it was probably in my head. I know it's not, but I'm afraid I'll go to the appointment and the SLP will think it is. Also, now that I know I have this problem, I am using compensatory strategies. After all, I'm an SLP. And as an SLP, I know that 1. it is not normal for a person my age to have dysphagia, and 2. there are two causes: structural and neurological. Structural didn't really jive with my symptoms. Good thing, since acquired structural problems are usually tumors. But neurological issues don't seem terribly desirable.

I decided to wait and see what comes of the neurology appointment before making a dysphagia evaluation appointment with an SLP.

I guess that's enough history.