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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 09-22-2008, 01:59 PM   #1
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please respond! Familial ALS

I've posted before, but have not gotten a response. Does anyone know how a person could tell if the familial type of ALS is in their family? Would it show up in close generations? I would appreciate a response from people who have had the familial type of ALS in their family. My mother recently passed away from ALS. No one that I no of in our family ever had it except her. I try to tell myself not to worry, but it is difficult after seeing what she went through.

 
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Old 09-22-2008, 02:07 PM   #2
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Re: please respond! Familial ALS

Karen,
I'm so sorry about your mother. Did your Mom ever take any statin drugs for high cholesterol? I ask because some people have contracted ALS that had been on these drugs and no one in their family had ever had it. Just a shot in the dark to perhaps allay your fears.

 
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Old 09-23-2008, 07:57 AM   #3
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Re: please respond! Familial ALS

Yes,
My mother was taking drugs for high cholesterol. I've heard about this possible connection before. Do doctors acknowledge this possible connection?

 
Old 09-23-2008, 06:09 PM   #4
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Re: please respond! Familial ALS

My sister passed away 10 years ago from ALS and I was told then that there was no evidence of any family connection. I have not kept up with any medical advances since then. As far as I know there is no proven evidence that it can be hereditary.Hope this helps

 
Old 09-26-2008, 03:35 PM   #5
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Re: please respond! Familial ALS

Karen,
Most doctors will not acknowledge this connection but if you do your own research you will find some that do. There's a lot of information out there that suggests there is a connection. It won't help bring your Mom back but it may help you to not worry so much that you may get ALS, just don't take any statin drugs.

Last edited by moderator2; 09-26-2008 at 03:57 PM.

 
Old 09-28-2008, 05:07 PM   #6
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Re: please respond! Familial ALS

Unfortunately I have to tell you that my husband's sister had ALS and now my husband has this awful disease. The only identified gene is the SOD-1
gene for ALS,. My husband was tested and he does not have the gene - but this is still considered familial with two in the family - sister and brother.
Let's pray for a cure - for the sake of my children and grandchildren. However, with no other history in your family, I don't think you should worry.
PD in Pa.

 
Old 09-29-2008, 07:58 AM   #7
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Re: please respond! Familial ALS

Rudiraven,

Thanks so much for your reply. After reading your first response, I did look into the possible statin connection on the internet. I was surprised to find so many articles on it. I know that the warning of side effects for these drugs says that in "rare" cases they can cause serious muscle pain and weakness and possible nerve damage. Sounds very similar to ALS. I'm surprised that there isn't more of a warning about this from the medical community,especially since the cause of ALS is currently unknown.

 
Old 09-29-2008, 04:03 PM   #8
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Re: please respond! Familial ALS

Karen,
I don't think it's as "rare" as they say it is. Most doctors don't report patients' complaints and attribute their complaints to other things. The more you research the more you find. The pharmaceutical companies make a lot of money on these drugs and convince doctors that they are safe. Most doctors don't have the time or put in the effort to do the research themselves. We have to be our own and our family members' advocates. The days of just blindly followiing doctors' orders has passed. Health boards like this one help people to help one another. Take care.

 
Old 09-30-2008, 10:20 AM   #9
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Re: please respond! Familial ALS

Rudiraven,
You are so right. When my mother was first diagnosed with ALS, I knew what it was, but didn't know how to help her. Thanks for your help! Karen

 
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