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scared1

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Feb 4, 2013
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Learn about ALS
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US
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UT
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salt lake city
Hi everyone! I am new to the forum. I'm a 21yr old male from slc Utah. I've had some weird things going on with my body. I'll be brief.

It started about 2 1/2 years ago. I began noticing facial weakness. Expressions such as smiling became difficult. I also began noticing my arms getting tired from simple movements. Then one day in November 2011 I literally woke up with twitching everywhere and weakness in my ankles/feet. Then it continued to progress. Again I would wake up with weakness elsewhere. In December 2012 it became hard to hold my head up. I started seeing a good Neuro and we did what seems like every blood test in the book. I also got an EMG and ncs done on my arms/hands. We tested about 6 muscles per arm. Everything was normal except for she said I appeared to have mild carpal tunnel in my hands. As of now I am still in the same place. Wide spread weakness and twitching that seems to favor my right side. I also had 2 clean mris. The best I can describe the weakness is the burning you get after working out
Thanks,
Ryan hanseen
 
Your title is the question you need to ask your doctor--not us. if it was ALS, she would have told you that was on the table. This is the wrong forum for you. Don't waste your time here--have you looked into chronic Lyme disease?
 
Yes I had a Lyme titter test that came back normal. My doctor told me als is a posibility but not likey. I guess my real questions are: can als progress this slowly (I still can move all affected muscles), does this sound like anything else that you guys have heard of, does this sound like smiliar to anybody who has been diagnosed, and why does it seem like there is no other possible causes? I also forgot to add that the back of my right calf looks flat when I flex, like someone chopped the muscle off. Although my legs appear symetrical when relaxed My Hands and hamstrings also cramp very easily. Whatever is wrong with me, it sure seems like an Atypical case of ALS
 
hang on, you aren't new to the forum, you posted in April last year?

same answer as we gave back then, this does not sound anything like ALS STILL
 
In your post ("The best I can describe the weakness is the burning you get after working out.") could very well be the problem. Too much, too often or even improper diet for the intensity and frequency you 'work out' in ratio to your body mass and size. Give the 'work outs' a break for a while.
 
Ok well it just seems to me like my doctor has ruled everything else out and is just reluctant to give me a diagnosis. The reason I posted again was because I noticed my leg is appearing to atrophy. I have weakness, cramps, facils, and w
 
What appears to be atrophy without any other explanation. How does that not sound like als. I really just need support right now and since my symptoms seems to fit the profile (or at least have similarities to) ALS, I figured I'd turn to you guys. I stayed off of Google and ignored my symptoms for a year. I just wish I knew what was wrong with me. It's bad to the point where I would be RELIEVED with a MG diagnosis or CMT or myotonic muscular dystrophy.I really appreciate you guys and have the utmost respect for all you pals and cals. If I don't have als, will you guys please just talk with me and discuss other possibilities? I'm so scared and have no one to turn to. I have a son on the way. I want to raise him and teach him things. I want him to see me like I was when I was healthy
 
I can't work out anymore. I'm talking about feeling that burning sensation from simple tasks like picking up my cellphone
 
If you are very worried, then go back to your doctor and talk to him/her. If you have clinical weakness and/or atrophy your doctor will be able to assess if that is the case.
 
I'm just looking for feedback. I'm sick and tired of my Neuro saying "i don't know" I want to hear what actual people with ALS think. A simple yes this does sound like als or no
 
Look, these are questions you need to ask your doctor. we don't know. Please contact your doctor again and make an appointment to review your case and ask every single questions you can think of. write them down in advance. I am sorry you are ill, but no, it doesn't sound like ALS.

I always think it is interesting that questioners get a test for something like Lyme and they take no as the answer right off the bat, or are told fibromyalgia or pinched nerve or anxiety and they can always find ways to discount that...immediately. instead, they become fixated on "atypical" ALS. If your doctor REALLY is not sure and thinks it could be ALS, then you need a second opinion with an ALS expert. But if you get a second opinion and it is not ALS from them--you MUST believe them. in the mean time, look for your answers somewhere else because it you are wasting your time here.

Our job is not to discuss the possibilities with you--there are plenty of forums out there about those possibilities that you can discuss your symptoms on.

by the way--a simple NO has been given to you by multiple posters. you really want a simple Yes...

good luck
 
A clean EMG = not ALS.
Yes, you could well have something wrong with you. Try Differential Diagnosis of Weakness by Josefowicz or something like that. There are scores of illnesses out there that are more likely than ALS. And if you have lost faith in your neuro, go see someone else. But as Barbie said, you must accept their diagnosis.
 
Again, your post... ("I'm just looking for feedback. I'm sick and tired of my Neuro saying "i don't know") if a highly educated and highly trained Neuro Doc says, "I don't know.." none of us know either. What feed back could we give you? If you told your Neuro "Well I read on the internet" or "I read on an ALS Forum..." he/she will probably give you a referral... back to the internet and be done with you! The diagnosis of any possible MND could take years from your first appointment. Some on here that have been diagnosed with PLS have seen a Neurologist for 4.5 years before they finally got a diagnosis. And some even longer. So, add those kind of years from the date of your 1st appointment and work on patience. But... enjoy what you can do and NOT what you can't do... for now.
 
I can't work out anymore. I'm talking about feeling that burning sensation from simple tasks like picking up my cellphone

You can't pick up your cell but you can type (endlessly) and your symptoms just gallop off in about a dozen directions.

Look here. Your neuro guy is your first "go to" for information. If he doesn't know, we sure as heck don't know either.
 
Not looking to get talked down on. Just looking for answers. I've about put a gun in my mouth on several occasions. I'm really just a mess. I'm trying to find people to relate with. You guys are treating me like I am just some kid with twitching. I'm looking for friends, not for critizism. The only problem with seeing an ALS expert in salt lake, is that there are none. Atleast from my searching. Anyways, sorry to bother you all. I will only post here again if I get diagnosed with als.
 
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