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dnkwillard

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I could use some advice on how to help my wife cope with fear of having ALS. Here is a brief recap of where we are:

My wife (36, mother of three) has had various symproms since May of 2004. Symptoms include twitching, muscle cramps, perceived weakness (muscles feel tired), jaw pain and others. She has seen a couple of different neoros and had 2 emg's (the most recent was Oct. 2006), several MRI's, nerve conduction tests and a couple of other tests that I can't remember. She believes her hands have atrophied over the last couple of years. Other than brisk reflexes, all tests and exams have been normal. Her neuros do not think she has ALS.

One recent symptom has her concerned about ALS again. She has regular cramps in one of her legs and in one of her hands/arms. In her leg, her calf muscle tightens and her foot points with her big toe curling up and the four others curl down. She can feel when the cramp is coming on. In her arm, her forearm tightens and her pinky and ring finger curl in to the palm. With both of these cramps she is able to stop them by opening her hand and/or lifting her toes/foot. Babinski is negative.

She has not been to her doctor since the last emg and refuses to go because of her fear of what she might hear. I am thinking she might have BFS, but the neoros around here haven't said much about that. What can I tell her to help her deal with the fear?

Thanks in advance for any advice. Obvioulsy, this has been stressful on our marriage in part because I don't know how to react to what she is dealing with.
 

Clbrink

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Maybe this may change a few things, worth a try, "the secret" a book, now on DVD, all about the power of the mind and our thoughts:

The Law of Attraction is commonly associated with New Thought and New Age theories, beliefs, and practices. It states that people experience physical and mental manifestations that correspond to their predominant thoughts, feelings, words, and actions and that people therefore have direct control over reality and their lives through thought alone. A person's thoughts (conscious and unconscious), emotions, beliefs and actions are said to attract corresponding positive and negative experiences, or "harmonious vibrations of the law of attraction". The "law of attraction" states "you get what you think about; your thoughts determine your experience." Although this idea has been popular among certain philosophers and denominational adherents for centuries, the idea has received intense criticism from multiple circles in the media, the scientific community, and even some areas of the New Age Movement.

Good luck,
Tina
 

shopathonic

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There is really no way for you or your wife to get a meaningful or definitive appraisal of her symptoms on line. The only way to do that is to convince your wife to see a neurologist--not just any neurologist, but one who specializes in neuromuscular diseases. She can only benefit from such a visit--she is already tormented with fears, and the likelihood is that such a visit will put her fears to rest.

Jeff
 

dnkwillard

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Thanks.

I'm trying to get her to agree to see a specialist. . .I am just not having much success. At this point, she would rather live with the fear that she might have it then go see a doctor and risk finging out she has it. Having said all this, she has been trying really hard not to let her fear affect her day to day and for the last nine months she has been doing pretty good. However, I know there are a lot of late nights and early mornings where she is crying and trying not to let anyone know.

Thanks again!
 

mamaoftwo

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If she has had symptoms since 2004, with no real progression, I think it would be safe to assume it is not ALS. But for her peace of mind, she does need to go back to the neuro. Also, you might consider some pyschiatric help for her anxiety. We do see folks like that on here sometimes, who believe that they have a terminal illness (and for them it is very real) but they are actually just in need of therapy. It is definitely worth a try.
 

CindyM

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Hello DNKWillard- you bring up an intreresting post. We don't often get the other side of the story. Some days the fear around here is palpitable, and I never though much about what that must be like for spouses and family. Thanks for sharing. Cindy
 

JAKE

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dnkwillard, I honestly believe a positive frame of mind goes a long ways in determining how you deal with any adversity. I was diagnosed in Nov. 2005 with "probable" ALS, considering I had problems 2 yrs prior to that, this is over 4 yrs now and I feel that I'm doing extremely well. Try to get her to think positive and keep her eyes upon God and let him take those worries away. May God bless you and your wife.
 

dnkwillard

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Thank you everyone for your thoughts. I've been spending quite a bit of time on here reading about those that have been diagnosed or are fearful that they will be. My heart goes out to all of you. I've gained perspective from reading some of the stories on here that will help me relate to my wife better. Thanks!
 
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