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robg

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Jun 7, 2011
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Learn about ALS
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UK
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North Somerset
City
weston-super-mare
I have been worried about als for years, about 20 years in fact, but it's really only now that it is proving impossible to get over my fears. For the last 8 years I have had a range of symptoms -weakness and stiffness, which I have managed through exercise and careful allocation of my time to working and resting activities. However, recently, the stiffness I experience around my forehead area has become almost intolerable -it gets worse the more I read/write/speak, and my diaphragm/intercostal muscles have become weaker and sort of 'thicker', less responsive.

I can feel a muscle, whichever one it is, getting progressively more strained and stressed, then it 'gives' and I usually get a rush of adrenaline, fear, panic, etc (although this was particularly bad before, it is less so now). This spirals down into further anxiety and insomnia, more fatigue, etc. There is no nerve pain, although I do have lots of twitches which I disregard mostly -it's the severe stiffness around my forehead that I can't tolerate.

I have had several emgs, the last being about 4 years ago, and this was clear. However, in the light of the recent changes, I may go to the doctor and ask him for another. It's the stiffness I can't stand, although more subjective stuff like diaphragm weakness is also scary, and there seems to be a link between the two muscle areas, which is very odd.

Does anyone have any ideas about how to relax this area -I seem to find that the more I relax it, the stiffer it later feels, and this drives me mad. I have tried meditation and I am good at 'imaging' the area to try and relax it, but really nothing seems to change the discomfort, and as mentioned, often makes it worse. There isn't really any muscle there as such, which makes it hard to relax.

I know I am currently lucky compared to the incredible bravery of the people on these boards, I know that ALS tends to be more rapid than this and believe me I do NOT want this illness, I know there is an element of anxiety involved in this, but I also know there is an underlying and generally gradually progressive issue underlying my state. But if it's not ALS, what is it? Any advice or comments to give any kind of insight would be really welcome.

Thanks

Rob
 
I have been worried about als for years, about 20 years in fact,[but it's really only now that it is proving impossible to get over my fears. For the last 8 years I have had a range of symptoms -weakness and stiffness, which I have managed through exercise and careful allocation of my time to working and resting activities. However, recently, the stiffness I experience around my forehead area has become almost intolerable -it gets worse the more I read/write/speak, and my diaphragm/intercostal muscles have become weaker and sort of 'thicker', less responsive.

If you'd have ALS for 20 years--you'd be long gone by now. Seriously, you've wasted 20 years of your life worrying about a fatal disease because of stiffness? Have they ruled out viral causes? Myesthenia Gravis which can cause muscle weakness that improves with rest? Lots of things--but it doesn't sound like ALS--at all.

I can feel a muscle, whichever one it is, getting progressively more strained and stressed, then it 'gives' and I usually get a rush of adrenaline, fear, panic, etc (although this was particularly bad before, it is less so now). This spirals down into further anxiety and insomnia, more fatigue, etc. There is no nerve pain, although I do have lots of twitches which I disregard mostly -it's the severe stiffness around my forehead that I can't tolerate.

Anxiety is the issue here--or something metabolic that causes a 'fight or flight' response--NOT ALS

I have had several emgs, the last being about 4 years ago, and this was clear. However, in the light of the recent changes, I may go to the doctor and ask him for another. It's the stiffness I can't stand, although more subjective stuff like diaphragm weakness is also scary, and there seems to be a link between the two muscle areas, which is very odd.

Then you certainly don't need anymore EMGs. Clean EMGs means NO ALS. Congrats--go out and enjoy life. See a pulmonary doc or your GP and see if you have asthma or a lung issue.

I know I am currently lucky compared to the incredible bravery of the people on these boards, I know that ALS tends to be more rapid than this and believe me I do NOT want this illness, I know there is an element of anxiety involved in this, but I also know there is an underlying and generally gradually progressive issue underlying my state. But if it's not ALS, what is it? Any advice or comments to give any kind of insight would be really welcome.

Thanks

Rob

Read the posts rcharlton so accurately advised--but just to reiterate here--the second one shows the progression of ALS in a post by trfogey--read it.

Treat your anxiety and let ALS GO! Lots of things can cause stiffness--ALS causes muscles to become paralyzed and die. Not stiffness for 8+ years.

If treating anxiety doesn't help--see if they can look at other conditions that cause stiffness.

Good luck to you
 
Many thanks both and particularly notme for taking your time and effort to write so extensively. I will print your reply off and stick it on the fridge -perhaps that will help.

I have just gone and bothered the GP -he did the usual tests, said it's not als, and prescribed some sleeping pills, which should do the job on the insomnia. The forehead stiffness remains though. :x

If anyone could give me a disease to research that might explain this 'benign' stiffness, that would be great.

Thank you again for your kindness.;)
 
If you bang your forehead hard enough on the nearest brick or stone wall, you won't notice that stiff feeling any more.

ALS doesn't start in the muscles of your forehead.
 
If you bang your forehead hard enough on the nearest brick or stone wall, you won't notice that stiff feeling any more.

ALS doesn't start in the muscles of your forehead.
Tell you what trfogey, many's the time I've been tempted to do just that!
 
Thank you notme for your reply -I will check the other forum out.
 
20 Years?! I'll be lucky to survive 2 years! Do me a favor...eat a big fat cheeseburger for me. Savor each bite and enjoy your life. All of us here don't have that luxury.

Best of luck to you.
 
Thanks twinmommie for taking the trouble to write your kind words.

It seems as though high cholestorol may be protective anyway, so no need to feel too guilty about the cheeseburger I suppose.

All the best to you -they are closing in on an effective treatment, so keep fighting!

Rob
 
If anyone could give me a disease to research that might explain this 'benign' stiffness, that would be great.

Please, stop doing that!
Seriously, diagnosis is your GP job !
 
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