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Hevnw8s

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Mar 1, 2014
Messages
17
Reason
Lost a loved one
Country
US
State
AZ
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Phoenix
Hi everyone,

I wrote about 2 months ago and I wanted to give an update. My original thread was closed so I started a new one.

I lost my mom to ALS and was having symptoms similar to ALS. My Neurosurgeon was concerned about by symptoms and sent me to an ALS Specialist at Barrows Neurological Institute last week. I had to wait a month and a half to get in. I posted my concerns and all of you were very helpful and considerate..I truly needed that. You offered your support and asked to give an update after my appointment.

I spent 6 hours at the doctor having a series of tests including an EMG. End result, I do have weakness but it is NOT ALS. I have Chiari Malformation and a syrinx on my spine. The compression is causing ALS like symptoms so my Neurosurgeon and I are discussing surgery on the base of my brain.

To all of you, may god bless your lives and your hearts. I am on to my new journey but you will all be in my prayers.

Thank you again for your time and kindness when I needed it.
 
I am sorry to hear that you lost your mom to ALS. My 79 year old father has it. I am so happy that you don't have ALS but it sure doesn't sound like you're having a picnic either. I will add you to my prayer list. Best of luck to you. Kim
 
>End result, I do have weakness but it is NOT ALS

Great news. Chiari Malformation sounds like another tough battle, but if the surgery is successful it is a battle you can win.

Good luck and keep fighting!

Max
 
Hi thank you for coming back and telling us. While I am happy this is not ALS ( and by extension no need to worry about FALS since your mom is the only family member) I am sorry about the Chiari and wish you much luck and a good recovery
Best wishes
Nikki
 
About 3 years ago I was initially diagnosed with Chiari Malformation Syndrome. After seeing a brain & spine surgeon it was ruled out. Before it was ruled out I thought, "Ok good, it's a fix 'n go." So, in a way I'm glad for you that it (hopefully) will be a "fix 'n go" for you. Keep us posted of your new journey. Prayers to you that it's 100%.
 
Al,

Thank you for your response. I was wondering: They told you it was Chiari Malformation and then ruled it out. What made then think it was Chiari in the beginning. Also, my EMG came back clean..but can that change years from now. I am 43 and my mom was 59 when she was diagnosed and passed away. Is it possible to still end up with ALS years from now?

I am not a hypochondriac and I don't spend my days stressing about this stuff. I was just wondering how long a clean EMG is go for?

Thank you for listening.
 
Al,

Thank you for your response. I was wondering: They told you it was Chiari Malformation and then ruled it out. What made then think it was Chiari in the beginning. Also, my EMG came back clean..but can that change years from now. I am 43 and my mom was 59 when she was diagnosed and passed away. Is it possible to still end up with ALS years from now?

I am not a hypochondriac and I don't spend my days stressing about this stuff. I was just wondering how long a clean EMG is go for?

Thank you for listening.
Ive often wondered the same thing about a clean EMG .
 
I can not speak for Al but I will try to answer about the EMG. A clean EMG does not, sadly, grant you a lifetime guarantee of immunity from ALS. However, if you had it done for symptoms however early in their course and it was clean then those symptoms are not from lower motor neuron damage as the EMG shows before symptoms are noticed I would also say if you are not FALS ( and OP you are not since only your mom is known to have had ALS) your risk of developing ALS in the future is very small and worrying about ALS in the distant future is only going to cause you misery.
Good luck with the Chiari surgery. Wishing you a swift recovery
 
I had four years of symptoms before I had a dirty EMG. My neurologist had a probable diagnosis in 2009, but until he had that final EMG he wasn't going to tell me. Just as well, there's not like there's something we can do.
 
Hi Hollister. Why did he suspect so strongly with a clean EMG? Was it truly clean or a little funky but not diagnostic? Did you have a lot of upper motor neuron signs? Are you upper motor neuron dominant?
 
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