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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 10-05-2003, 08:12 AM   #1
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Join Date: Jul 2003
Location: TEXAS
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GI_WILD HB User
Cool variant of ALS

HI all.
I just returned from Houston after seeing my ALS Specialist.I am somewhat relieved, but still not out of the woods. Seems as though they have discovered some subset variables of ALS.
Mine is called Bibrachial Amyotrophic Diplegia.
As you know by my past post I was diagnoised with PLS by by local Nuero.I was not convinced with that cause of the atrophy in my shoulders and arms. I do have the symptoms of ALS accept for signs of upper neuron problems. Motor neuron diease, progressive muscular atrophy might be the parent in my case.
Will have to wait and see the progression from this point on.
Here is a link to read about the new findings. Seems as if my Specialist DR APPel does not make quick DS about ALS. Which is good.There are so many variables to this disease. [url="http://www.neurologyreviews.com/jul02/nr_jul02_entity.html"]http://www.neurologyreviews.com/jul02/nr_jul02_entity.html[/url]
I hope Vatash sees this, as I think we have the same symptoms.

 
Old 10-05-2003, 08:39 AM   #2
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Join Date: Feb 2003
Posts: 278
reneeintx HB User
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That is great that you are getting answers!

I think you are seeing one the leading specialists in the country. You see I live in Houston and am currently seeing a neuromuscular specialist that trained with Dr. Appel at his clinic, so I have lots of faith in him.

My only symptom is twitching and I was afraid of having ALS, but my doc convinced me that I don't. I have twitching due to anxiety and thyroid problems. I've been twitching for almost a year, that's the only symptom I have. It's getting less frequent though.

Anyway, I'm glad you're getting out of limboland, so they can start a treatment plan for you. You're in great hands with that clinic.

Wishing you all the best,
Renee

 
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Old 10-10-2003, 09:54 AM   #3
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slaughter17 HB User
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Hello GI_WILD havn't heard from you in a while. Sorry I didn't reply sooner. It is great to hear that you finally have an answer! I had no idea there was so many varients of ALS. It only makes a diagnoses harder for people to recieve. I hope you are doing well. Is there any medications prescribed for
Bibrachial Amyotrophic Diplegia? What do they do for this disease, treat the symptoms or treat the disease itself?
Great to hear the news! let us know how you are doing in the future.
__________________
Proud Mom of Two Girls

 
Old 10-10-2003, 08:10 PM   #4
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Join Date: Jul 2003
Location: TEXAS
Posts: 25
GI_WILD HB User
Talking

Well, to answer your question Slaughter, there is no medication for it either, it is actually a subset of Progressive muscular atrophy. My Dr says it has the symptoms of als yet not as progressive. I pray that he is right. My hands and fingers are getting really fatigued now, with some typing, Still have no pain anywhere!walking not affected yet. Here is the site with some info on BAD.BAD is GOOD!! [url="http://www.neurologyreviews.com/jul02/nr_jul02_entity.html"]http://www.neurologyreviews.com/jul02/nr_jul02_entity.html[/url]

Thanks for the reply, I have been reading, but not posting much.

 
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