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banksm

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Joined
Jan 2, 2014
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33
Reason
Learn about ALS
Country
uk
State
yorkshire
City
Huddersfield
Over the summer I was tired and then one morning in September I woke with floppy limbs. I didn't think much of it. In October, I drove myself to a and e. I felt terrible. I had had a week of feeling like I had been plugged into a socket and then on the Friday I couldn't lift my arms as high as my shoulders. I could barely drive. I just felt that my body was breaking down. I spent 8days in hospital but they discharged me after a brain scan saying that I needed psychological help. Now 11 weeks on, I am really weak and stiff. I seem to have every ALS symptom. Stiff arms and legs. I cant walk far or do much without enormous fatigue. My chest muscles feel stiff and I keep having to take deep breaths. I am woken in the night by either my breathing difficulties or the sheer effort that it takes to turn over. This morning I woke completely stiff inside and out. I have a 3year old son and I cant take care of him. I was previously fit and healthy. My swallowing is odd and I am gagging and yawning a lot. I have some twitching now too. Scared. Had loads of blood tests, all negative. Can this all really happen in 11 weeks? Any thoughts, particularly doctors. Thanks. Michelle.
 
Hi Michelle,

I'm sorry that you don't feel like you always did and that you are so worried. I can't help you ease your mind, because I have no clue at all what is wrong. Did you have an EMG? They say that should point to ALS or, hopefully, points away from ALS.

Just wanted to give you some support, to let you know I read your story. Can't help you, but I'm a worried one just like you. Have totally different symptoms by the way, but some of them do point to ALS (others don't). Still, I did not have my EMG yet, it is scheduled for half January. So I have to wait and this is no fun at all...

Hope you won't have to be so worried for long. If you did have an EMG, which was good, try not te worry it is ALS. If you didn't have an EMG yet, try to get one, cause it will ease your mind if it's okay. And if it's not okay, then you know...

Good luck!
 
Thank you. Good to talk to someone. Having Emg around end of Jan. It is torture the wait but I feel that this is no ordinary illness if you know what I mean. So full of different emotions. Have just turned 40 and have a beautiful 3year old son through ivf. I cant bare to leave him. I was so happy before this came out of the blue. Drank a couple of cans of diet coke a day and am thinking that I have caused this. :-(
 
has the recommended psychological help made a difference? Who determined you need an EMG?
 
A neurologist who said there maybe weakness in my legs after examining me. I don't need psychological help. I love my life and certainly would not name making up illness. They just couldn't diagnose me so as am blond young and female, labelled me as an air head. ;-)
 
Right now my advice is to stay off the net as far as researching your problem. You don't know what it is yet and all you will do is scare yourself. Wait for the emg. Worrying will not change the outcome be it good or bad, all it will do is waste time that could have been spent better. We have all been in your shoes, some still are.

It could be anything at this point, so many of these disea ses mimic each other and it is hard to determine what it is. Have patience and listen to the drs, they are the one with the education and experience to make the decisions. Don't let this take over your life. While you are waiting, live your life to the best of your abilities and stay strong.
 
I agree with everything said already, but suggest a diet change. Go as natural as possible, cut out processed foods with MSG and definitely cut out diet anything. Hemp hearts are absolutely jammed full of good minerals and vitamins, along with being high in protein. We have also use at least 4 TBSP of coconut oil daily, usually in a smoothie with hemp hearts, yogurt and frozen fruit. This is not a cure by all means, but is good for probably everyone. We have been putting kale and spinach in the smoothie for dark greens, and it does taste just fine. Put you energy into your son and improving your diet, and maybe a walk every day. Meditation and prayer is also excellent. Best of wishes to you.
Paulette
 
Thank you for taking the time to write. I am a christian so lots of prayer going on. Yes. I agree, will take in board dietry advice. :) neet night.
 
Worried again this morning. Wake up completely stiff. My chest is stiff also and short of breath. I am not overweight and was fit before all of this. Had a heart echo and heart trace. All normal.
 
Am house bound at the moment. Sorry for posting but need to let off steam. Want my old life back. Read something about cidp on here yesterday and wondering if it could be that.
 
I'm sorry I can't help in answering any of your questions but I just wanted you to know my
Thoughts and prayers are with you.
 
If short of breath - don't fool with that. Go to the hospital if it continues.

You can also do the following and if it makes a difference, you shoukd be OK. Take deep slow breath through your nose, release very slowly through pursed lips. Repeat 3-5 times.
 
Thanks. I have had chest stay. Heart echo. 24 hour tape. All negative. I have the sighs. Air hunger. Not hyperventilatation. Thanks for your concern. :)
 
Meant x ray. Read stickies by the way.
 
I love your comment about trusting God by the way Elaine.
 
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