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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Dear Accatoni,

I am no expert on ALS or other Neuron Diseases, nor do I have one. BUT I have been down the road your'e trying to go and I'm hoping I can stop you before it gets overwhelming with jargon, expense, and fear.

Two years ago I too started having Muscle Twitches all over. From eyes to knees to deep inside my stomach. All came on randomly throughout the day. And I too also had them increasingly during the night. Then I started feeling pain and weakness in my left arm, I was scared to death. I went to the urgent care thinking their might be something wrong with my heart. I went for neurological testing to have everything come back pretty good, but man it was more stressful than any muscle twitch. My doctor then took me down the road of Rheumatoid Arthritis, which was equally un-fun and nerve racking. After 25 seperate blood tests, 4 MRI's, 2 CT's of the brain (with and without contrast), 2 EMG's, 2 EKG, 1 EEG, and numerous other checks, guess what?

I have Anxiety. I think people often feel that anxiety isn't a real illness but it is. Its dangerous, painful, tramatizing, serious, exhasting and lonely. But it is real, and it has real symptoms and can cause real problems. Don't be afraid to say to yourself, I have anxiety and thats why I'm twitching. Or to say to others, "Oh, thats just from my anxiety." Grasp hold of your anxiety dignosis and learn as much as you can about it. Dont feel or let others make you feel that it's a illness any different than having diabetites, or ALS.

So my advice to you, and what I've learned after the long hard road, is to be upfront with yourself and your doctors and say, " I have anxiety, but I am able to have other problems as well. I am concerned about...such and such, and I would like your opinion." this makes sure that your doctor dosen't discount your illness or worries and will hopefully bring you peace of mind. If your doctor doesn't respond well, time to find a NEW DOCTOR.

For ALS, most people experience prgressive severe symptoms that DO NOT let up, nor do they disappear. The ALS association also states that most spasms happen in the affected area that the disease begins, the most common arms, then legs, and rarely the tounge can be affected first. I would reccomend as an anxiety expert to NOT LOOK UP ANYMORE SYMTOMS, but rather write down the problems you are experiencing and at what time (who knows, maybe you'll se a pattern to help you identify some of it) and then talk to you doctor.

As for anxiety the things that have helped me the most were to get plenty of sleep, I mean like 9 hours plus. Studies have shown it clinically reduces severe mood changes in people with bipolar disorder, so it might help for people with chronic severe anxiety. And hey, what could it hurt?! Also, drinking enough water (the things dehydration can do to you are terrible), and cutting out any stimulants such as excess sugar, excess starch, and yes, CAFFINE can help greatly as well. Alot of the changes you have to make in life for anxiety are hard, but its no different than what someone would have to do if they had another medical condition. I hope that you find some solace in this, and that you do what you need to do to get better. And even if you end up having ALS (which I don't think you do), remember to take everything a day at a time and live in the present. There is a good movie on the ALS patient Stephen Heywood that may inspire you too, its called "So Much, So Fast." I recommend it to anyone who discovers they have a illness, from anxiety to cancer, its really eye-opening.

I hope I haven't been to preachy, and if you want to chat I'm always on AIM at Dutcheyre.

Good Luck!
Aubrey : )





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