Scared

[knl]

Hi,  I am a 32 year old female.  My Dad was diagnosed with ALS approximately 5 years ago and he is the only person in my family to ever have this disease.  My question is #1, how do they know that it isn't the hereditary type (family history) has to start somewhere and also is pain considered a first symptom of ALS?  I have constant pain in my right arm, wrist and fingers, and pain in my left fingers.  I wake up in the middle of the night with a pins and needles feeling in my left hand on a regular basis.  My grip in my left hand is a little weaker than it used to be.  My doctor is having me get a nerve conduction test to check for carpal tunnel but I am completely terrified and convinced that it's ALS.  My doctor did a routine carpal tunnel exam in his office and said that he can tell that there is some atrophy.  Of course that very word freaked me out.  Please let me know what you think.  Thanks

[Maisey1]

Hi- sent you a msg on your e-mail. Hope you received it!  

[knl]

Hi,

Thanks so much for your reply and for the information.  I will definitely check that website out.  

knl

[chochmeh]

There are two types of ALS, sporadic and familial...if your family has the familial type, they check the SOD1 gene....but, really, noone knows why or how people get this disease...your odds go up if someone in your family has it, but, not greatly...this is a disease that typically victimizes caucasian men in thier fifties...there seems to be a connection with athletic, thin men and ALS...women usually get the bulbar form of it...there is a good site for research and help called ALS-TDI. It was started by a guy who's brother died from ALS.  IT is run by people who have had ALS in thier families..it is a non-profit organization that is going all out to find and cure ALS. The site has forums where PALS (people with ALS) talk about alternative treatments...i noticed a lot of them are trying lithium and find it is slowing down the ALS.  It is an awesome site that will help calm your fears, help with day to day living and news about exciting new breakthoughs...Here is a link to the forums:
http://www.als.net/forum/default.asp

[knl]

thank you so much!!  I will try that!

[speechgeek]

Hey guys

You can send each other a private message with e-mail address. So Kristin click on maisey1 in blue and you will their profile, add them to your friends list or click send an email. you can put personal info in there. Good luck

Rebeccah

[knl]

Hi there,

I have no idea how to send an email address through this thing.  I realize it's meant to be secure but it would be nice to have that option as I would like to be able to communicate more that way.  Know what's really strange.......when I was attempting to figure out how to send an email address, I noticed you are from Batavia IL.  My Dad lives in Elgin, Il and I visit him atleast once a month (I live in Ohio).  Small world.

My Dad is living at home and will continue to.  My step-mom is his only care giver.   I don't know how she does it all.  My Dad is on a feeding tube, completely paralyzed and can only talk very quietly and only for short periods.  That has been the hardest thing for me I think due to the fact that he's in Illinois and I'm in Ohio.  There is virtually no communication now other than when I visit and when I talk to my step mom.  This is such a cruel disease.  I've never seen anything like it before.  Do you have a lot of anger from this??  I have struggled so much with the anger issues.  I just don't get it.  Well, it was great to hear from you. Hang in there!!!  Talk to you soon.

Kristin

[Maisey1]

I tried to give you my e-mail address, but it 'bleeped' it out. Do you know how to do that?

[Maisey1]

Yes, it is nice to talk with someone who can relate. I've never known anyone else with this disease, nor do my friends.
My dad says his is sporadic too. He was 62 when diagnosed-how about yours? I actually spoke with a genetic counselor today and she said one of the things they do is have a neuro do an exam, I think it's a 'peace of mind issue'.  She was going to speak with my dad's Dr. and see how to handle me.

My anxiety is out of control. I'm having such bad attacks, I guess you could call them that. It's difficult to concentrate and as soon as I twitch, I freak. I do have a prescription for Xanax which when I take that, the twitching is pretty much is nonexistent. I have an appointment with a psychiatrist tomorrow. I never in my wildest dreams thought this would happen--I guess no one does. It's just so hard.

Is you dad still at home? Mine is in the 'middle' stage, but refusing a feeding tube at this point. He weighs about 109 pounds and I'm worried his body is just going to give out from lack of nutrition. His voice is getting 'raspier' which really scares me as I can't imagine him not being able to speak to us.

Have you ever gone to a support group? I've never looked into it, but thought I would. I really would love to 'talk' with you more, it's nice to know I'm not the only one out there. I hope everything goes well Thursday. Sounds like Carpel to me---it can be painful as I remember it vividly with my 1st pregnancy.  ***@****

-kelly

[knl]

Hi,

Thanks for your reply.  It's nice to talk to people who can relate (even though I'm sorry you are going through this).  My Dad is still alive and he has told me several times that this is the sporadic form.  I guess it's just so scarey to watch.  I am on the computer all day at work so there is a very good possiblity that it's Carpal Tunnel.  My nerve conduction test is this Thursday.  I have been using a wrist brace when I sleep and it does seem to help quite a bit.  I guess my biggest concern is that I have noticed a lot of weakness in my grip since this all started.  I'm hoping that's normal with Carpal Tunnel.

I have a lot of anxiety as well.  I used to suffer from panic attacks pretty regularly, however, I have had that under control for quite a few years now.  So, how is your Dad doing?  Mine is in what I guess they would call the "final stages".  It sucks.  He's amazing though.  He has maintained such a positive attitude through this whole thing.  I don't think I could do it.  

Well, it was nice hearing from you.  Feel free to contact me anytime you'd like to chat.  

knl

[Maisey1]

Hi-I am 36 y/o female and going through the same thing. My dad was diagnosed almost 3 years ago. There is a genetic test that can be done looking for mutations in the SOD1 gene. However, from the research I have read, this isn't the only gene that can tell you for sure, it just helps to narrow it down, especially in cases where multiple family members have been stricken with this disease.  

My father did have the testing done...guess someone in the family told him my great, great grandmother may have had it although there is some dispute.....anyway, it came back negative with no mutations. While it calmed my fears to a certain extent. Is your father still alive and would he be willing to get testing done?

However, my anxiety is at an all time high (pry me off the ceiling feeling) and when this happens, I too, get the pins/needles feeling at night with both hands. I had carpel tunnel when I was pregnant and it is the same feeling. Also, when I was on anti depressents (dad was diagnosed 4 wks after daughter was born) I gained about 15 pounds which made the carpel tunnel worse. I also get minor cramping with this. Are you on the computer quite a bit?

My problem is with my anxiety I also get muscle twitching.....doesn't help with the coffee and diet Coke I  was consuming, so I quit that 6 days ago. It has helped quite a bit. I had pain in the back of my leg for quite a while, went to an ortho, had a cat scan and it was tendenitous (sp?).....I get it usually after I work out as well. You could try the wrist braces to see if that helps. I try to find a 'reason' for things that are happening to me, make some adjustments, and if that works, talk with your Dr.

I may be going out on a limb here, but I don't think 'pain' here is a symptom. I have e-mailed my father's Neuro for advice seeking genetic counseling. When is your nerve conduction test?