Mike's Story

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Mike's Story

Postby Mike in Des Moines on June 18th, 2003, 4:14 pm

I started twitching just about 3 weeks ago. I thought I'd share my story, in that reading all your stories these past 3 weeks has been very comforting to me. Like everyone else, I entered "twitches" on Google, and got very scared when ALS and other bad stuff came up and spent much of those first few days testing my strength and coordination and losing a lot of sleep. Thank goodness I somehow found my way to this site. Reading everyone's experiences, and finding various symptoms in the different posts that matched mine, was comforting and really calmed me down.

Anyway, I woke up in the middle of the night about 3 weeks ago (May 2003) and my body was going crazy, with random twitches all over the place. They were especially frequent in my right calf and above my right knee. At first I thought "pulmonary embolism" and that my leg was getting ready to throw a nasty clot to my brain. (This was not long after reporter David Bloom died and we do have a family history of that.)

Then I soon realized the twitches were all over--legs, arms, and a few in the back, chest, neck, etc. After a week the frequency and intensity calmed down (but they are still going on), and then I started getting other symptoms: the "weak in the knees" feeling, some weird static electricity feelings like someone had just rubbed a baloon on my shin (except the feeling would stay there a long time), the pins-and-needles tingling in various parts, some perceived muscle fatigue especially in my right hand, some very slight numbness in places, and a few minor aches and pains here and there in various muscles.

The hot spot still seems to be my right calf and above my right knee, and I do still get twitches all over. I'd say I get at least one twitch every minute or two--some tiny, some big. Some last for an instant, some longer. And the muscle fatigue seems pretty standard in my right leg and right hand, but the intensity varies, and isn't really that bad to begin with (feels like I excercised just a bit too much).

I had a consult with a neuro last week. He said my strength and coordination are all good and seriously doubts ALS, and actually said I probably have BFS (I was impressed by that becuase I didn't prompt him, and according to some of these posts, some neuros don't know much about BFS). I go for my first EMG test in mid July.

The only thing he found was that my ankle reflex in my left foot is reduced. And parts of the top of my foot are not as sensitive to cold as they should be, and he put a tuning fork type device on my foot and told me to say something when I couldn't feel the vibration any more. I could certainly feel the vibration to start with, but as the vibration got lighter I stopped feeling it before I should have. I do have high arches, so he's going to check for CMT next time.

My question to you: Do any of you long time BSFers have reduced ankle reflexes or a little desensitivity to cold/vibrations on your feet (but you know for sure you don't have anything else besides BFS)? Or does this just reek of CMT? After my initial worry about ALS, I can certainly live with CMT if that's what it is--at least that won't kill me, and apparently some people have it so mildly they don't realize they have it.

I remember, too, about 20 years ago I had a summer maintenance job where I would occasionally drop heavy stuff on my feet (I wasn't very good at that job). I've had some slight numbness in my toes since then, and was thinking maybe the rest of the stuff in my foot is attributable to that--and I just never noticed.

I'm curious to what you guys think, especially those of you with reduced ankle reflexes and/or reduced sensitivity on the tops of your feet (if there are any of you).

Thanks so much. I enjoy reading all your posts (and have images in my mind of what some of you frequent posters look like).

Mike
38-year-old male
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Postby Jenn311 on June 18th, 2003, 5:24 pm

Hi Mike!

Welcome to BFS. What in the world is CMT? Enjoyed your post! I have never been to a neuro, never had anything like that tested....but I don't have any problems in my feet so to speak of...

Take care!
Jen

PS....I know what you mean about imagining what some of the posters look like! Funny how we have mental pictures of things to guide us along in Web-world.
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Postby reneeintx on June 18th, 2003, 8:44 pm

Jen~

CMT(charcot marie tooth disorder) is an inherited neurological disease characterized by a slowy progressive degeneration of the muscles of the foot, lower leg, and forearm, and a mild loss of sensation in the limbs, fingers, toes. The first sign of CMT is generally a high arched foot or gait disturbances. Also someone may have loss of some normal reflexes, occasional partial sight and/or hearing loss, and in some patients, scoliosis.

Please everybody don't freak out...I was just describing this disease. CMT is not very common. *notice..it's inherited*

Mike~I'm glad you found a competent neuro. Whether you have BFS or CMT.. Welcome.


I don't have the ankle problems you talk about. I have hyper-reflexes. I don't have any numbness either. I do have a sensation of cold water running down my legs on occasion.

Glad to have you here!

Renee :) BTW~BFS won't kill you either ;)
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Postby Jenn311 on June 18th, 2003, 8:59 pm

Wow I wonder if I have that...I have really high arches... :?: And once many years ago (well...16,) I was skiing for a week and my toes all went numb. That numbness lasted several years. I showed it to a family friend who was a doctoer and he just laughed at me. But then again...that wasn't progressive, so...maybe I don't have that.

OY!
~Jen
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Postby Mike in Des Moines on June 18th, 2003, 9:34 pm

Oops, didn't mean to start worrying people about CMT! This is, after all, a BFS forum! My bad! One thing I have learned from all the posts I've read here the last 3 weeks is just because you may have a few symptoms consistent with a certain disorder or disease doesn't mean you have it--the symptoms could apply to many other things.

I guess the best thing for me is to wait for my EMG and get some further testing done and narrow down some possibilites. I have read that that some people lose reflexes and sensitivity just becuase they age--and there's a certain percentage that this will happen to in every age group. Plus, like I said in my previous post, I dropped heavy things on my feet 20 years ago, and I know that messed up my toes--and may have messed up other things I didn't even realize.

Thanks for your responses so far. This is such a supportive and understanding message board!

--Mike
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Postby jcavan4125 on June 19th, 2003, 7:44 am

Hi Mike,
As was mentioned, CMT is an inherited disease. If nobody in your family has it, it is not likely you have it either! Just like the the joke "If your parents didn't have any children, you won't either". Welcome to the board.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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