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SaraLaw

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PALS
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Little falls
I am 36 yrs old. My father, uncle, aunt, cousin, and grandmother all passed from ALS. I found I had the gene mutation for ALS in 2003 but, hopefully, am yet to have any symptons but lately my hands and feet have started to bother me. I have no weakness in them and my fine motor skills seem fine, but they feel kind of clumsy. It started with just one foot that seemed a little pins and needly...but now my hands are starting to bother me. They tingle and it's hard for me to keep them open. I read the sticky notes and it did seem to ease my mind a bit, but I was hoping to get feedback from someone who knows more than I.
 

Nikki J

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PALS
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Hi Sara
I am very sorry about your family members.

While your symptoms don't really sound like ALS given your genetic status you should go to see a neurologist and get checked. I am guessing you are SOD1? It can present in some funny ways.

I hope it turns out to be nothing. Please let us know
 

LaurieCALS

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Hi SaraLaw,

Welcome to the forum Sara and sorry for why you're here. I just want to add my voice to Nikki's and say that your symptoms don't sound at all like ALS. I was very close to someone as he was getting diagnosed and his onset was very different.

I can imagine your concern, but sometimes we simply lose our balance and trip.... and it's just that. Pins and needles can be just a simple blood flow issue and is extremely common.

Follow up but meanwhile try not to worry.

Peace,
Laurie
 

SaraLaw

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PALS
Diagnosis
05/2003
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US
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Ny
City
Little falls
Thank you for your feedback:) I really do appreciate it. It is very hard for me to talk to my family about this, so sometimes I feel very alone.
I will make an appointment with my neurologist just to be sure. Once, again, thanks!
 

Nikki J

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PALS
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Good luck Sara. Please think about joining the face book familial als/mnd group. It is specifically for people from fals families. There are people there in exactly your situation
 

SaraLaw

New member
Joined
Aug 24, 2014
Messages
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Reason
PALS
Diagnosis
05/2003
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US
State
Ny
City
Little falls
Yes, Nikki J, it is SOD1. And I just sent requested to join that Facebook group...thank you so much:) Also, the symptoms I were worried about don't seem to be ALS-related:)
I do have 2 more questions if anyone can help me, though.
1. At my last visit to my neurologist, he told me that even though I had no symptoms, I could still go on riluzole (sp?). He said he couldn't tell me one way or another if it would benefit me or even prolong getting symptoms, but was an option. I just don't know what to do. And,
2. With familial ALS, can the gene be passed down through a "carrier"? For example, my cousin's father and grandmother had ALS, but she got tested and doesn't have it, can it still be passed down through to her children? We just didn't know if she had to have it for her kids to get it or if it could be passed genetically.
Any input would be hugely appreciated:) Thank you so much!
 

Nikki J

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Joined
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Messages
11,015
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
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If your cousin tested negative and so does not have the defect then she can't pass it on. Her kids don't have to worry.

Riluzole. You are the third gene carrier I have heard of to be offered it recently. I wish someone had offered it to me because I have found it actually helps my ALS weakness a little. My neuro says it is because I am so very early in the disease. I do wonder if I had had it a year ago would I still be ok now? No one knows of course. It is expensive so hope your insurance covers. You should not get pregnant while taking it. It does interact with some other medications. You need blood tests periodically because it can affect your liver. It can upset your stomach ( although I found it got better after a couple of weeks). It is a little tricky to time as it needs to be 2 hours after eating and one hour before and twice a day close to twelve hours apart.
Look forward to seeing you on FB!
 
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