FAMIAL als ! Yikes! Help!!

[snowboarder44]

Hello I am 25 and lost my uncle to als last year he passed away at 50 years of age with als the same with his mother and his grandmother as well all with als. We have just found out it is in our family 100%.

I am now worried although i know it mostly strikes at an older age i am having trouble with my right foot and leg. My leg keeps twitching all over and my foot feels like it is chronically sprained it has been over 2 months and still not gotten better. i haven't found any clinical weakness left but it definitely feels weak and i am constantly leaning on my other leg wherever I go. I fear for the worse that I am the person in my generation to get als at a young age. any insight to beginning of als in a leg or ankle would be helpful. keep in mind i am more concerned because of our famial als, or I would not be here worrying like many others

 

[lgelb]

Very sorry to hear about your uncle and his family. If all you have is "it feels weak," there really isn't anything to worry about. Losing a family member to a genetic disorder is bound to be traumatic and you may want to talk with other members of your family or a counselor about your feelings.

One way sometimes to put things into perspective is to spend some time helping someone less fortunate, and honor your uncle with the best life you can lead.

Best,
Laurie

 

[Nikki J]

Sorry about your family. I would like to add to Laurie's comments.

FALS has a number of genetic causes and some strike young but it sounds like your family does not have that type.

What happened to/ how is your relevant parent ? As a sibling and child of affected people your parent has a 50 percent chance of having the family genetic defect If your parent did not inherit it you don't have it. If they did your chance of getting it from your parent is 50 percent

Get checked out but from what you have said it is unlikely that this has anything to do with FALS Do you know if your uncle was geneticaly tested?

 

[TomSanti]

I would like to also add that your nick would suggest you are a rather active fellow and pain is not normally associated with ALS. I would however agree that a closer look is probably justified in your case.

Good luck and God bless,

Tom

 

[snowboarder44]

my relavant parent died when i was 3 . she died of other causes around the same age as I am now. so its hard to tell whether she would have had it or not.

 

[snowboarder44]

Wish I knew what was going on. Famial als?

I posted here once before I just wanted to give an update on my symptons. I went through benzo withdrawal for 3 years so after that this is really hard to deal with. First i had twitching probably benign, then my foot started bothering me feeling like its permanently sprained stiff and its getting hard to stand on my toes. Now my mouth is bothering me, my tongue twitches,
in behind my uvula probably my soft palate feels very heavy and now at 25 I have sleep apnea??? i wake up everynight choking i cant believe this. I have excess saliva like a dog and when i drink fluid comes out the corner of my mouth its like ive been at the dentist and have numbing in my mouth. My nose constantly runs and I am NOT sick. I have an neurologist appointment in 10 days. With my luck there will be something wrong with me. I have epilepsy as well after a bad head injury things just keep getting worse and worse. Considering I have famial als in my family I wouldn't put this past me. The choking everynight is making me very depressed and the soft palate feels very heavy and weird in the back of my throat. If someone has any insight or something helpful to tell me I would appreciate it.

 

[lgelb]

Re: Wish I knew what was going on. Famial als?

If you truly have sleep apnea, treating it with a PAP machine could help you feel better -- every little twitch and twinge feels worse when you are not getting refreshing sleep, and it's harder to deal with whatever comes along. And yes, sleep apnea can occur at any age.

 

[ShiftKicker]

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