ALSFORUMS.COM   - ALS/MND Support Group   - Fibromyalgia Support Group   - PLS Support Group   - PBP Support Group   - PMA Support Group   -  
Old 03-05-2012, 12:32 PM   #16 (permalink)
Member
Registered Member
Join Date: 2010
City: Highland
State: CA
Country: US
Diagnosed: 04/2011
Posts: 444
Blog Entries: 3
kmendsley is on a distinguished road
Default Re: Worried about ALS - Ist post

I think it might be that if your weakness is true in your left side arm and leg. Do you have any sensation/numbness/tingling problems in that side?

..And just a gut reaction from what you wrote ...obviously not a MD, but just a thought of a road you could down to look if your problems persist

kmendsley is offline  
Old 03-05-2012, 12:39 PM   #17 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2012
City: LO
State: NY
Country: UK
Diagnosed: 00/0000
Posts: 6
Marcella is on a distinguished road
Default Re: Worried about ALS - Ist post

Thanks for that and for responding so quickly - I have some tingling sometimes, but I work at a computer all day and I generally tend to put things like that down to bad posture and repetitive strain injury and to be honest I hadn't even considered it as a symptom because like the weakness, it has been on and off for years. Also in relation to the weakness, I dont think it is true clinical weakness as I can still functionand do everything I always did, it is more of a sensation .. that probably makes no sense to anybody but I am not always great at describing things properly. Anyway thanks again for your help and insights - it really is much appreciated.
Marcella is offline  
Old 03-05-2012, 12:48 PM   #18 (permalink)
Member
Registered Member
Join Date: 2010
City: Highland
State: CA
Country: US
Diagnosed: 04/2011
Posts: 444
Blog Entries: 3
kmendsley is on a distinguished road
Default Re: Worried about ALS - Ist post

Not a problem. This post makes me even more sure that you shoul definately follow up on a possible MS diagnosis. Sensation problems are not part of ALS, so you can drop that worry.

MS, on the other hand, relapse and remitts. That means, that you can have symptoms for a week, and then the next week be totally back to your normal self. This can go on for years and years because once people start to worry of a problem, it will remit and they figure it was a virus or something that is now back to normal.

Sounds like your weakness is also more 'fatigue' which is also a part of MS...and other diseases of course as well.

My advice is to get some blood tests done to check out vitamin levels, and the MRI to rule out MS. Good luck.
kmendsley is offline  
Old 03-05-2012, 12:51 PM   #19 (permalink)
Very Helpful Member
Registered Member
 
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Diagnosed: 00/0000
Posts: 1,600
HelenL is on a distinguished road
Default Re: Worried about ALS - Ist post

Marcella, I'm sorry I didn't write earlier, and you got some scary-sounding posts in the meantime... I agree that twitching is not indicative of ALS by itself. Heck, I have ALS and barely twitch! The swallowing issues could very well be a thyroid issue, did your pc run a thyroid test? I've had swallowing problems for decades, not related to my ALS.

A number of factors can cause the twitching, and yes, MS is among them... stress, lack of Vit D and B12 can also contribute to twitching... and too much can as well. If you haven't been taking Vit D, I would suggest you start taking an additional amount and see if that helps. Meanwhile, please try to remember that ALS is pretty rare, and chances are you DON'T have it!

Keep us posted, and above all, remain positive!
HelenL is offline  
Old 03-05-2012, 03:38 PM   #20 (permalink)
Extremely Helpful Member
Registered Member
 
trfogey's Avatar
Join Date: 2008
City: Raleigh
State: NC
Country: US
Diagnosed: 07/2007
Posts: 2,040
trfogey is on a distinguished road
Default Re: Worried about ALS - Ist post

Quote:
Originally Posted by Marcella View Post
I suppose my question here is do the above symptoms make any sense and do you think I should be worried,
Depends on what you are worried about. If you are worried about ALS, you're barking up the wrong tree, in my opinion. What you've described here sounds nothing like the onset of ALS. What it does sound like is benign fasciculation syndrome (BFS). And stress will definitely make BFS symptoms worse, giving the appearance of progression. A lot of BFS patients even report developing swallowing problems -- the most common of which is something called globus, which is a feeling of a lump in the throat.

If you are interested in finding out more about BFS, there is a very good website called a b o u t B F S dot c o m. They also have a support forum where you can ask questions of people who have BFS and discuss symptoms and treatments.

Quote:
Originally Posted by Marcella View Post
my doctor wasn't remotely worried when I told her the symtoms and my concerns about mnd, but surely some sort of a neuro exam was warranted, or are the symptoms just not those associated with ALS and if not it really does hightlight the stupidy of reasearching symtoms on line.
The problem with doing your own diagnosing (which is what you've done here) is that, when you are wrong (as you likely are here), it tends to irritate the doctors and suggests a less complimentary diagnosis. And once they've tagged you with that diagnosis, it becomes more difficult to persuade them that you have a real problem.

Good luck to you.
trfogey is offline  
Old 03-05-2012, 04:17 PM   #21 (permalink)
Senior Member
Registered Member
 
notgivnup's Avatar
Join Date: 2010
City: country
State: Darkside of Moon
Country: OS
Diagnosed: 11/2010
Posts: 818
Blog Entries: 1
notgivnup is on a distinguished road
Default Re: Worried about ALS

Marcella, try to stop worrying and if you are that fearful by all means see another doctor. Listen to what they say. There is nothing to worry about until told otherwise. I wish the best for you.
notgivnup is offline  
Old 03-06-2012, 10:46 AM   #22 (permalink)
Extremely Helpful Member
Registered Member
 
notme's Avatar
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Posts: 2,667
Blog Entries: 4
notme is on a distinguished road
Default Re: Worried about ALS

Twitching isn't ALS. Weakness with ALS is NOT transient--so no worries there, either.

Start with your GP and go from there. Lots of things can cause muscle fatigue and twitching--including stress and worrying about a strange symptom.

Don't let the stories freak you out. Start with a doctor and see what, if anything, is wrong. Please, read the sticky posts.
notme is offline  
Closed Thread

Tags
als, back, choking, female, go away, mnd, swallow, swallowing, symptoms, tongue, twitch, twitches, twitching, weakness, worried


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search


Similar Threads for: Worried about ALS
Thread Thread Starter Forum Replies Last Post
Very worried that I have ALS: please help joy2 Do I Have ALS? Is This ALS? 68 04-19-2012 02:30 AM
I am getting worried... mike b General Discussions About PBP 6 11-17-2009 08:54 PM
Please help, I'm so worried I have ALS WorriedMe Do I Have ALS? Is This ALS? 15 11-15-2009 03:39 PM
It's been a while....still worried! keegansmommy4 Do I Have ALS? Is This ALS? 9 10-28-2009 08:20 AM
Yet another worried one... Hayleywart Do I Have ALS? Is This ALS? 5 10-28-2009 01:38 AM


    
   
   
   
   
  ALSforums - Get help and support with ALS/MND