It Just Blows...

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lhagsjr

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28 Years old. I should't even know what ALS is. Doctors wont say it because I can talk and walk right now and Im so young. But its ALS. It has RAVAGED my body. My arms and legs are pathetic. How can this happen to a 28 year old good person?
 

Clbrink

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It shouldn't happen to anybody, I agree it just blows!

Hopefully this is not the diagnosis for you, you are very young, when my husband was diagnosed 4 years ago he was 36, that was young, the doctors were surprised.

There are many other things that appear to be ALS, before they say you have ALS the will rule those all out. Try to stay positive, I know it is difficult!

Tina
 

patricia1

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After seeing seven different neuros I relized that they really dont know much about the brain. It is still a mystery.And some of us have diagnosed of als and it maybe something they dont even know about They are still learning. the nervous system is quite complex. There are many variants of ALS some people die in 6week after diagnosed and like Hawkins are here over 25 years. I remember going for massages because of back and leg muscle pain Maybe I had ALS then I dont know. But before I was diagnosed it was very obvious. I guess they dont want to give a death sentence unless they are very sure. And even then I dont think they are sure. Pat
 

crystalkk

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Lou,

I thought you your emgs are pointing to myopathy.

Did you ever go back to the Nuero at jefferson?

Why don't you try to get an appointment at john hopkins for myopathy
explain the situation to them.

Or thet least see a rhuematoligist.....Nuero's don't always have the answers.
If that does not work see an endogrinoligist.

I believe at john hopkins they will all work with you together.
Leslie even had her muscle biobsy sent out there to be evaluated ask her about it.
 

ltr

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Yea Lou....Johns Hopkins Myositis Clinic is where I am going next month and since you showed signs of myopathy that would be a good place for you to get some answers too. You see a whole team when you go, neurologist, pulmonologist and rheumatologist. Just a thought.

PS..you never answer us when we ask you about your myopathy diagnosis and I think some of us are wondering why there hasn't been follow through with it.
 

crystalkk

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Leslie,

Your right he never returns an answer when we ask about it.
 

lhagsjr

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Myopathy

When I had the EMG on Halloween the Neuro who did it said possible Myopathy(2nd time and 2nd Neuro who said this). This is when I was excited because I thought they were on track to figure out what was going on. When I went to my follow up appointment to my neuro to talk about the tests he said inclonclusive and he didnt think I had anything Neuromuscular. Of course, I was devastated again with no answers.
 

ltr

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I wouldn't let that go Lou. As you know myopathy mimics ALS and that could be the answer to your problems.
 

crystalkk

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Lou,

Not all myopathies are nueromuscular. Some can be metobolic.
That's why we keep saying go to rheumatologist.
 

comfortable with ALS

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Why do you guys always seem so questionable and confrontational about everyones diagnosed. Why do we seem so mean. Leslie, you have been diagnosed. with myopathy which is not als, should we question you? just aksing..
 

lhagsjr

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I have no idea...

what u are talking about? If you are talking about BillyD, he is doing the same thing u did when u started on this board. 15 posts a day about the same thing but doesnt listen to anyone else. You have gotten much better and are a good member of this community now. He is taking over the board now by posting 18 times a day. He just needs to relax.
 

comfortable with ALS

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I meant the people who were being mean to you. I have calmed down some.
 

lhagsjr

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u know now...

posting every 5 minutes that u have ALS wont make things better....
 

crystalkk

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jenny,

nobody is being mean to lou, we want him to get answers, not keep going back to the same thing.
2 of his emg's showed some myopathy, there are other drs outside of nueros that might be able to help him.
 

crystalkk

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jenny,
read all his posts and you will see why we keep questioning him about this.
 
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