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NickoleF

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Learn about ALS
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MO
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St.Louis
OK so for the past 2 years my husband has been going through the hell. It all started with weakness in his legs that over time caused pain which made it worse. He know just has the feeling he says of having to remind his legs to walk when he first stands up or gets out of the car. At work he has to climb into his mail truck in a certain way so that he doesn't get a charlie horse. He has gotten more of the these in the past 2 years than ever before. Now he says his legs are just weak and he sometimes just slides them around because he is afraid he is going to fall.

A year ago he fainted in the bathroom and hit his head really bad on the stone floor. No on e knows why he fainted and that was the only time it happened. He got a concussion and has a headache everyday since than some better than others but its always there he says.In the past month he woke up one morning with extreme back pain in one location of his spine. the slightest touch gives him pain there. The doctor took an x ray and said that they could see muscle spasms and when he goes to the neurologist to let them know.

His hands are weak. He says they feel like he has carpal tunnel in them because he can't lift the way he used to. I think I have listed all his issues besides insomnia and difficulty staying asleep when he goes to sleep. He literally will wake up every 4 hours from sleeping he can't sleep longer than that.

His Opa died 3 years ago of ALS and it took forever for them to find out what it was because he was in a car accident that messed up his knee pretty good and the doctors kept telling him all his symptoms were due to the accident. I just don't want to wait that long to know and the doctor is already sending him to a neurologist for his symptoms so from people who really know the disease what do you think. He is 33yrs old and we have 5 kids so be honest with me.

Thank you!
 
I think he's young for ALS, but it's time to see a neuro and find out what's going on. There are lots of potential causes for his leg issues, his back issues and his hands issues and ALS is very, very, very rare, so don't get too focused on ALS. ALS is a diagnosis of exclusion, so every other possible didease has to be ruled out... and that's a lot of tests to go through. Let the neuro do his work. Good luck and keep us informed.
 
All those symptoms don't fit with ALS. It's possible he has more than one issue. But it doesn't sound like ALS off hand. He would be getting progressively worse if he had it, which you're not describing. So good news-- probably not.

Best to continue investigating with the doctors.

Good luck
 
Laura I guess I should've also mention that he is more than anything just generally weaker. He stopped exercising because it was to hard and does less projects around the house. He in the most recent time has had tree trouble in the morning getting to of bed sometimes taking 20 mind just to sit up.

Do you know of other things this might be if it is not ALS?
 
Laurie sorry about that.
 
Hi I know you are terribly worried and understandably so. We of course can not guess what your husband's issue might be but in the sticky post at the top of this subforum there is a long ( and incomplete) list of other things that have led people to fear ALS.

As the others have said there are several things in your description that do not sound like ALS. I would add that having one relative who had ALS does not raise his risk of getting it. Most people who are familial ALS have multiple relative affected as I do. They do not suspect FALS unless there are at least 2 others diagnosed

Hard as it is you need to wait until you have your neuro appointment for answers to begin and even then you may not have an answer right away but you should have a direction
 
Nickole, while these are troubling symptoms, they don't sound like ALS to me.

The fainting, headaches, back pain and insomnia have nothing to do with ALS.

As to the weakness, ALS generally starts in the feet, not the legs, and two years is plenty of time to have become totally paralyzed, but he hasn't.

I understand your concern about ALS, but I think you should forget about that. There are so many other things to worry about. I know this isn't much help, but at least I can say with some confidence that the problems he's experiencing are not a fatal disease.
 
ALS doesnt start with pain its a motor not a sensory neuron disease. If he has pain thats good its not ALS
 
>I understand your concern about ALS, but I think you should forget about that

Ditto that!
 
Has he been checked for CFS (chronic fatigue syndrome) and/or endocrine diseases?

EKG? Doppler? The later to check for circulatory problems. (Related to the fainting)

Bloodwork for vitamin defieciencys? Head and neck MRI?

This to me does not sound like ALS at all, but clearly, there is something going on. I would ask for a referral to an endocrinologist, and if a skullbase/neck MRI has not been done ask for that.

Good luck!
 
So an mri of the brain was done this past week and the only findings were fuild in the sinus cavity. The neuro we saw sees no reason for further testing on his end since the back spasms are new and have not lasted more than 2 months. We are now being referred to a pain management specialist. Hope to find something with this Dr.
 
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