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obsidian

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Hi all,

First let me say how amazing you guys are. I've read through many posts and you're all so supportive. Community is a wondrous thing. I have some unanswered questions so I was hoping someone had an answer. I'm a 25yrd old, fairly healthy male with a history of lower back issues. About 1 month ago, I started on propecia for a slight receding hairline. A couple of days later while watching tv, I noticed a twitch on my left knee right below my kneecap. A few days after that, the twitching became continuous, almost 30 -50 times a minute. This had never happened to me before and I was really scared. I stopped propecia immediately and hoped the twitching would go away. About two weeks later, the knee twitching stopped. Now I have dispersed occasional twitching everywhere (about 10/hr), stomach, calves (both legs), and very infrequently my knee where the continuous twitching had occurred.

I went to see my doctor and he thinks it might be nerve related from my lower back. He said that ALS twitching doesn't go away once it starts somewhere and that it is more likely to occur first in hands/feet/tongue and not start with a large muscle like the leg. Of course after he says that I immediately start "feeling" twitches on my hands/feet/tongue. I'm a fairly neurotic person so lets just say I've spent more time starting my my hand today than I have working.

I know ALS is very rare, but then again I am allergic to temp (cold, which is even rarer). My doc is going to do some bloodwork and then if my twitching doesn't get better in a few weeks, he going to refer me to a neuro. Here are my questions.

1. Is it true that once twitching starts in a area, it doesn't really stop? Is the change in my twitching pattern a good sign?

2. Should I wait for it to get worst/better or should I just make an apt with a neuro now. Does insurance cover exams like EMG?

Thanks for the help,
Obs
 

shopathonic

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Obs--
There is no set pattern for twitching progression as an ALS scenario--there seem to be nearly as many variants as there are cases. The usual pattern in ALS is that cramps and weakness precede the twitching, but not always.

You might want to monitor your symptoms for a month or so before seeing a neuro. If you are preoccupied with the situation, there's no harm in seeing an neurologist--just make sure it's one who specializes in neuromuscular diseases. If he/she recommends an EMG--even if only as a precaution--then it will most likely be covered by your insurance, but you can verify this by calling the customer-service department of your insurance company.

Best,
Jeff
 

spedteach2002

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Worried about having ALS

Hello everyone,

My grandmother died of ALS back in 1974. I was diagnosed with Charcot Marie Tooth Disease back in 1990. Recently I have been having different symptoms. My left foot feels like a vibrating sensation goes across the bottom of my foot and I have been getting cramps in it daily. I often get cramps in my thighs and lately my hands and fingers. I have muscle weakness and fall quite a bit. The muscles in my hands have deteriorated. I also have breathing problems and swallowing problems. I have an appointment at the MDA clinic in January, but was wondering if I should wait until then or get in to see another doctor before then. Please someone help me.

Thanks,
Jen
 

shopathonic

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Jen--
It is understandable that yhou would be anxious about your symptoms. If you would like to see a doctor before January, you should call the nearest large hospital--preferably a teaching hospital where they train doctors--and ask for the neurology department. Ask which neurologists in that department specialize in neuromuscular diseases. Then call the offices of those doctors to see if they take your insurance (if that is a consideration). You will probably be able to get an appointment well before January. But it is important to find a neurologist who specializes in neuromuscular diseases if you want to get an authoritative evaluation of your condition.

Best,
Jeff
 

spedteach2002

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concerned

How often do people with als have fascics? Are they on both sides or can they be just one leg or one foot. I have them in my left foot, left thigh, left upper arm and right upper arm. They aren't constant, just occasionally. But I have them daily.

Jen
 

Blizna

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You are 23, thats almost like me. I have the same for 5+ months - Im too really VERY neurotic and anxious.

To your question: In general ALS fascics do start in one place and migrate. Once they start, they wont go away. ALS fascics dont start immediately on many places. ALS is disease of weakness - twitching without other signs means nothing. However, they are some unfortunate exceptions, but in your age, how is the chance to have rare form of rare disease in also rarely low age? Much lower than tomorrow you can be killed in car accident.
 

spedteach2002

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I am not 23 but 35 and have a family history of als and muscle weakness, atrophy, problems swallowing and breathing, and major fatigue, and i cry at the drop of a hat.

Jen
 

Blizna

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Sorry, I was responding to Obsidian. However, he is 25 as I see - but thats not so different from 23.
 

obsidian

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hey blizna,

Thanks for the response. Gotta admit, pretty freaked out. Hard to believe though that my knee has been twitching for a month and then the day after I come out of my doc's office, my hands and feet start.

I called my doc on Friday and he wants to see me again next week. He thinks it might be psychosematic...but I'm watching my hand right now, and the padded area below my thumb is definitely twitching.

The sad fact is that even if I don't have ALS, which would be awesome, there's somethign wrong with me as twitching is not very often a physical issues. Really freaked out and scared, but glad for the support. Thanks.
 

CindyM

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I have been twitching for months and have lost muscles where I used to twitch and can understand your frustration. I freaked at first but after coming here I met a lot of folks who live full and happy lives with ALS, and that helped me settle down. It is going on 18 months now, and I feel like we might be getting closer to a DX but then I thought that before so who knows?

My advice is to settle in for the long haul- it could take some time to find out what is going on. In the meantime, it is best to focus on friends and family and the things that make you happy. It might be just BFS, but especialy if it is BFS you will need to learn the skill of focusing on things that make you happy. JMO. Cindy
 

Blizna

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Obsidian: I fully understand why your new twitches started immediately when you came back from doc - thats really from your mind and thats "good" sign" - ALS would not start in those places in a moment so immediately.

For those who dont believe twitching can be caused by mind: After 4 months of twitching and keeping asking my girlfriend, she is twitching now too! Not too much, but more than is usuall.

Obsidian, I think you have BFS or some lower spinal infection.. (or multifocal motoric neuropathy or many other disorders). I would bet on BFS in your case.
 

spedteach2002

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Another question

Has anyone had a "vibration" sensation? I have had this feeling on the bottom of my foot and I get cramps in the same part.

Thanks,
Jen
 

ltr

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yep...my legs vibrate and sometimes I get whole body vibration. It is very disturbing.
 

spedteach2002

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ltr, Have you been diagnosed with ALS? Is that a common sign? I have the twitching, muscle weakness, cramps, difficulty swallowing, and breathing problems. I thought I was nuts feeling the vibrations. Noone understood. I am glad that you do.

Thanks,
Jen
 

ltr

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I have been diagnosed with polymyositis and am just hoping that it is not really als. I say this because I have a lot of symptoms that don't fit the polymyositis diagnosis. I have all the troubles as you except no trouble swallowing.....knock on wood! there are a lot of people on here who have complained of the vibrations, so you certainly are not alone in that one. You can try the search bar at the top if you want to read what others have said about it. No one seems to know what causes it though.
 
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