Concerned about my symptoms

[rugger]

Hi all

I'm a new member as of April 2008. First off, heartfelt thoughts of admiration for all those with a positive diagnose who are helping others, it must take extreme courage.

I have been reading these forums for a little over a month, reading and wondering about my condition.

I am 47 years old, in otherwise good health and condition, but have been noticing some disturbing symptoms as of the start of the year. What first led me to a concern for ALS started with numbness in my hands, later diagnosed in February as carpa\l tunnel syndrome. It's more than carpal, because I get it in my pinky and right foot as well, but that's not my main concern.

I noticed in some of my research about CTS about fasciculations, which I had never heard of. Well, I have fasciculations all over, mostly in my legs. I am an avid cyclist, and I noticed them last summer after a ride, and they have been persistent and spreading. I now get them and twitches in my thighs, feet, arms, eyelid, cheek, etc. But what really shook me was that I noticed them in my tongue a few days ago.

back to the fascics, they occur mostly 24/7, but worse after a ride. I push myself pretty hard, and am in otherwise great shape, and I try to cycle about 100 miles/wk, I also run about 15, and stairmaster 3 days/wk. I also lift weights quite a bit, and so far, I haven't noticed any significant decrease in performance. The weight and repetitions for various weight routines has been fairly consistent for the past 2-3 years. I may be perceiving somewhat increased fatigue in my arms, but not significant.

As for my legs, there is a definite difference in my right leg. However, I tore the achilles about 10 years ago, and injured the knee in an accident 5 years ago. So the right has been a little more gimpy than the left. I notice that the thigh muscle and muscles around the knee are more sore during a ride. There is no significant fatigue during a ride, and strength seems pretty good. Sometimes I may feel weaker in the right, but as I cycle, the strength returns and it doesn't seem too fatigued, and may even feel stronger at the end of the ride (about an hour). After the ride though, sometimes the thigh and knee muscles seem weaker, and may shake when I stand. It will also twitch quite a bit, and the thigh will ripple upon contraction, such as in a half squat. The visual contractions also occur on the left, but slightly lesser. I attribute this to hard working out, which usually dissipates after a few hours.

I went to a neuro who checked my leg muscles, and recorded fascics, but said I most likely have BFS. He saw no other signs of concern.

Now for the part that really has me spooked. I am fearing that I have signs of bulbar. Sometimes my jaw and tongue feels tired after chewing, and I notice I speak a little slower than before. When I chew dried fruit or raw carrots, it feels like it's not swallowing all the way and gets stuck for 30 minutes or so. I can eat chips and toast most of the time with little trouble. I also feel that I have more saliva than previous, but some of this may be to heightened sensitivity. Sometimes I think about it and swallow alot, sometimes I forget about it and don't notice it. I have noticed sometimes when talking that I have to stop to swallow. I am not leaving drool on the pillow as far as I can tell. I have no nasality, and speech is coherent, but I feel like I may be more labored in talking.

I will be calling to make another appointment with my neuro to discuss the bulbar symptoms, which I did not notice or mention during the first visit in early April 08

So now questions:

1. am I right to be concerned? What in particular?

2. Can other things cause perceived hyper-salivation?

3. Can tongue and jaw fasics cause fatigue in these areas? Can BFS also occur in these areas?

4. I did read somewhere that other sufferers of BFS commented about effects of aspartame. I do drink a fair amount of diet soda, could this be a factor?

Sorry for the long read, but the past month or so has been a roller coaster, some days I feel positive, other days quite depressed.

Thanks for reading, and best wishes to all.

regards

John

 

[wright]

Hello Rugger

It doesn't appear to me that you should be very concerned. I think you have explained the problems in your right leg . . . especially if it feels stronger as you ride. The tingling in your hand is easily explained by the amount of cycling you do (I'm going to assume that you ride with your hands on the bars). The foot problem could easily be explained by the amount of time you spend working-out . . . especially cycling and running, which can reak havoc on your lower back and cause all kinds of problems in your legs and feet.

BFS sounds like a good diagnosis . . . it is notorious in people who work-out. They can also start out of . . . what appears . . . no where and then be with you persistently. It might be a concern if you had weakness, but you said you don't . . . and you are someone who can track even slight changes in strength since you work-out regularly.

As far as your bulbar issues: my guess is that they are due to anxiety (funny how they sprung-up when you started worrying about ALS). The upper esophageal sphincter (that's the ring of muscle that relaxes which allows food to go down the esophagus when you swallow) is something can be affected by a slew of things . . . including anxiety. It can easily spasm and cause difficulty in swallowing and cause things to feel as though they're stuck in your throat. My guess is that it will go away with time and when you find your health is not in jeopardy. The other symptoms can also be explained by anxiety.

My advice: go see your neuro again and tell him/her your fears. Since you already made an appointment to do that, you're well on your way.

Keep us posted.

 

[rugger]

Hi Wright, thanks for the feedback.

Anxiety? Boy that's an understatement. My fear is that I am in emerging stages, so I am very attentive to every little quirk, etc. I'm not having other common symptoms such as choking, but am still cautious that it may be down the road.

But what are your thoughts on the tongue fascics? That one really hit me when I saw that. I figured it was a sure sign, but was looking for other's input with more knowledge.

Thanks again.

 

[rugger]

Also to add, and thoughts on the saliva issue?

 

[wright]

Tongue fasics can be benign . . . that is . . . part of BFS.

The extra saliva: I bet that is perceived.

Again, I'm doing all of this over the internet, so I'm only speculating. However, from what you have said . . . I wouldn't be too concerned. You will get definitive answers from your neuro, but if I were a betting man, he/she won't have any concerns either.

Go relax and enjoy your weekend.