Other Symptoms

During the time I started having urination difficulties, I also began developing other weird nonsensical symptoms. I first noticed my problem swallowing when I was playing a game of outdoor soccer and went to get a drink of water at halftime. I took a big gulp of water from my water bottle and for some weird reason when the water moved to the back of my throat it didn’t go where it was supposed to go. Half the water went down my throat with a painful swallow, but half the water went upwards at the back of my throat and out my nose. I stood there on the sidelines with water pouring out of my nostrils. It was like I was using one of those neti-pots thingies that you use to clean out your nasal passages. I had a stream of water shooting out of my nose. I wiped away the drippings from my nose and tried again. Same result. The water wanted to go up my nose instead of down my throat. Uh oh. What does THIS mean? Over the next few days I began to notice how difficult it had become to simply eat meals. I would take a bite of food and move it to the back of my throat and I swear, this is the only way to describe it, it felt as if my body “forgot” how to swallow. My body froze and my throat muscles ceased to work. I would move the food to the back of my throat and it went halfway down and then stopped - no further. I would bring the food back up, chew it again, take a smaller portion, and then move it back and try it again. Sometimes it went down, sometimes it didn’t. On more than one occasion I had to spit out my bites into a napkin because there was no way it was going down at that point in time. I eventually worked out a system of taking smaller bites, chewing thoroughly, and swallowing every bite of food with a drink of water. The water helped the food go down but I was always fighting to keep this new water-food slurry from going up my nose. I had asked my Urologist if he knew of anything that could be causing this behavior. He was bluntly honest and told me that was not the part of the body he dealt with, but that it sounded to be something caused by a neurological disorder. And since I had no structural or physical damage that was causing my urination difficulty, he said that was probably neurological, as well. So he referred me to my first Neurologist, Dr. Mackay.

I met with Dr. Mackay and described all my symptoms to him. The urination difficulty, the swallowing difficulty, and another problem that had recently surfaced - my itching. I first noticed the itching when I woke myself up one night scratching the back of my legs uncontrollably. I couldn’t believe how bad my legs itched. I scratched and scratched and scratched but I never felt relief. There was no rash or hives or anything of that sort - there was just an intense need to scratch an itch. This symptom wasn’t necessarily a painful one, but it was very irritating. And it would migrate as well. It started off on the back of my legs and would persist for two to three weeks before it moved to my upper back. Then after another couple of weeks it would move to my upper thigh and so on. The worst was when it spread to my face. I looked like I had a nervous tic or something as I was constantly scratching my face and squishing my nose and eyes to seek temporary relief. Even my eyeglasses as they rested on the bridge of my nose caused me to tear up from the sensitivity that now surrounded my face. Dr. Mackay heard about all of these symptoms and pretty much summed it all up when he said “humph, that’s bizarre.“ He’s a straight shooter that Dr. Mackay. I underwent all of his neurological tests, a lot of which had to do with my balance and muscle strength. They were actually kind of fun as I stood on one leg and touched my nose and walked back and forth with my eyes closed. I’m a pretty good walker so I passed those tests with ease. Once he finished his exam, he entered some notes in his computer and then ordered me to have an MRI of my head and spine. He told me his first thoughts were that I might have MS, Multiple Sclerosis. Difficulty urinating, trouble swallowing, and itching can all be signs of MS so he set me up for a time to have the MRI and made another appointment to see him in a couple weeks to discuss the results. But in the meantime, he wanted me to see someone concerning my difficulty swallowing. During my examination, Dr. Mackay had noted that my soft palate at the back of my throat wasn’t moving correctly when I opened my mouth and said “aahhh”. He referred me to see a speech language pathologist/speech therapist for an initial consult and swallow evaluation.

I met Patty, my speech language pathologist, the following week and conducted my initial examination in her office. She began by asking me to describe my swallowing difficulties and took down notes in her notebook as I spoke. After talking in great detail for about a half an hour, she left her office and returned with a tray of food from the hospital cafeteria. The tray had a slice of bread, some peas and carrots, a bowl of soup, some sort of chicken cacciatore, and a glass of juice to wash it all down. She asked me to go ahead and dig in while she sat back and watched. I must admit, it was a bit odd. I felt like I was in some strange fetish film and ate my food in silence as she just sat there watching, writing notes, and occasionally asking me questions or giving me directions. “Try swallowing this way” she would suggest, “Now turn your head to the left before you swallow to see if that might help.” It actually did help. After I had a good amount of the hospital food, Patty told me it was plain to see that I was having difficulty swallowing and she would like to administer another test known as a Barium Swallow. Once again, I will not bore you with all the specific details so feel free to google “Barium Swallow“ if you‘d like. But basically it is a test in which I eat bits of food soaked in a chemical liquid known as barium that shows up on an x-ray machine. Images of my swallowing are recorded by an x-ray video machine and the barium helps to illuminate the food and shows its flow as it moves down my esophagus. By using x-rays, the specialists can get a better idea as to where any problems might be occurring along my upper digestive tract. Of course I wasn’t able to do the X-ray test during this appointment. No. Of course not. Instead, I had to set up another time to come in and perform the barium swallow. Now, on a side note, it seems to me that doctors enjoy setting up appointments. Why else would it be that every time I go and see a doctor, it appears that I leave with another appointment or two set up for some future date? Appointments, appointments, appointments. I am always scheduling appointments. I have become a master appointment maker. If only there was a way to harness this talent and use it for good. I haven’t thought of it yet. If you have any thoughts, let me know. Anyway, on the bright side, at least I was making the necessary appointments to see the doctors to try to find the answers to my mystery illness. I was working my way towards a finish line and it felt good taking the steps needed to get there.

So I have just reread what I have written so far and I am a little bothered by how depressing and gloomy it sounds. I have only tried to write what has happened to me this past year to give you all an idea of what I am going through, but how boring it must be to read about this doctor’s visit and that doctor’s visit and blah and blah. So I think I am going to stop here for the day. To give you and myself a break. Don’t worry though. I have plenty of doctor’s visits to tell you about in future posts.

I also thought this would be a good time to tell you about an incident I had with my daughter the other day.

So I was sitting in the living room reading a magazine when my 4 year old daughter walked up to me and said, “Dad, do you want me to grow?”. She had asked this question in an accusatory tone as if she thought I had secretly never wanted her to grow. And that she had finally found out my secret and was now onto me.
I was taken aback and said “Of course I want you to grow. Why?”.
“Because if you want me to grow you need to get me dannun-go-guhs. They help you grow.” she said.
“dannun what? They help you - wait. What?!”
“Grow dad, they help you grow. And you can make popsicles out of them.”
“What are you talking about? Where did you hear this?”
“On TV, on a commercial. Dannun go-guhs help you GROW”.
Clarity finally dawned on me, “Do you mean Dannon Go-gurt?”
“Yes. Dannon go-guh. Can we get it?”
“We’ll see.” I say.
This response is good enough for my daughter and she leaves me to my reading, but not before yelling back over her shoulder as she exits the room, “And you can make popsicles out of them!”

This is the reason we prefer commercial-free PBS.