Old 06-27-2012, 08:23 PM #1 (permalink)
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Default I think FALS is knocking at my door.

I am very thankful I found this forum and have been reading threads and found them very helpful. I thinks it's time to contibute and start talking with people about ALS even if it's in a forum. I am 36 year old male that has had many generations of our family die from ALS. My father died some years ago when he was 45. Like my father, his father also died from this disease in his late 30's. I have been having some symtoms over the past 6 months. My left arm has been "crawling" and twitching. I have noticed weakness and possible atrophy in the muscle where the crawling/twitching has been. I have always been a gym rat and tried to stay in shape. I wieght train and always try to work my body evenly. My left arm has been getting weaker dispite traing evenly. I can notice a physical difference while looking in the mirror from one arm to the other. Over all I am still in good shape but I fatigue very fast. I have been sleeping in my car during lunch to rest and regain some stamina to finsh out my work day. I spent alot time in my 20's trying to understand ALS and what happened to my dad. I accepted the fact that I have a 60% if having this disease and came to grips with the notion many years ago. I have a wife and 2 beautiful kids 4 and 7...... If ALS is "knocking at the door", and I think it is. I just don't know how to start this possible new chapter in my life. I need a little push in the right direction and want communicate with poeple who cant relate to what I am going through. Can ALS be diagnosed in the very early stages of the disease? Thanks for looking .
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Old 06-27-2012, 08:34 PM #2 (permalink)
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Default Re: I think FALS is knocking at my door.

Hi Rusty
I am from a FALS family too so I know what you live with. Find the best ALS clinic in your area and get evaluated. I think there are some positive things coming soon and I know a lot of researchers are working hard to understand FALS as a key to this whole mess.
I hope this is anything else. I will pray for you
Best wishes
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Old 06-27-2012, 08:46 PM #3 (permalink)
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Default Re: I think FALS is knocking at my door.

Thanks for the prayers...... Best wishes to you and your family too!
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Old 06-27-2012, 08:51 PM #4 (permalink)
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Default Re: I think FALS is knocking at my door.

I am from a FALS family as well and have feared this all my life. I am in the process of getting a diagnosis, but have been diagnosed with Psuedo Bulbar Palsy. I watched my mother and my aunt die from ALS. I am here with you all the way. It takes patience and prayers. jamiem
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Old 06-28-2012, 08:54 AM #5 (permalink)
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Default Re: I think FALS is knocking at my door.

Hello Rusty,

I too, am from a fALS family. I've remained UMN 2001 to present. I'm facing the fear of my next exam as I've developed new symptoms this past year.

There is a facebook group of fALS with 800 plus members if you are interested.

Best wishes, Roger
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Old 06-28-2012, 11:48 AM #6 (permalink)
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Default Re: I think FALS is knocking at my door.

Hello

ALS can be diagnosed when only one limb is involved, yes. But first, they are going to rule out other reasons for your arm issues such as nerves being trapped.

I can't imagine being under this cloud so young. The question you have to ask yourself is are you going to be more content enjoying every day now, or are you the type of person that will drive yourself nuts wondering while you wait to see if you progress.

If you are going to worry and stress over what might be, then I would suggest going to an ALS specialist sooner rather than later.

And at the risk of sounding callus, I'd be getting things like life insurance in order now, before you see anyone, if you haven't already done so. Not because I think you have ALS, but more because if you have a FALS history, it's just the responsible thing to do.

Personally, I prefer to know what's wrong with me. I just have that type of personality. Obviously if you notice weakness spreading to other limbs, you need to be seen sooner rather than later.

That said, it is possible something else is going on with your hand that is treatable, so waiting wouldn't be my first suggestion.

There is a lot of support for PALS here. There are members here in CO that might be able to suggest docs for you.

All this rambling...leading to this. Yes, it can be diagnosed early when there is atrophy, it's not really 'early' at all. Again, it can still be a trapped nerve.

If you are diagnosed with ALS, enjoy every day with your kids. There is some great tech out there now for later if needed. Please let us know what the doc says. Don't waste your time with docs that don't know the disease. Get a referral for a neuromuscular specialist as soon as you have insurance and all in order. We always say here prepare for the worst and hope for the best. And it can only be ALS when it can't be anything

We are here 24/7 if you have questions.
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Old 06-28-2012, 11:49 AM #7 (permalink)
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Default Re: I think FALS is knocking at my door.

My reply went to moderation. Yes, it can be diagnosed with only one limb involved. Check later for the longer reply. Hugs and best wishes.
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Old 06-28-2012, 03:42 PM #8 (permalink)
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Default Re: I think FALS is knocking at my door.

Mine also started in my left hand/arm. I began with testing early as there are so many tests to get through in order to rule everything else out - before an ALS diagnosis. If you're willing to start investigating and are ready to 'find out' I'd say schedule an appt with a neuro and start the process. I am actually thankful I started the process early so that even though I have my diagnosis i am still 'functioning' so I can do the things I want to and prepare 'in advance' for upcoming changes for my home and life. Welcome and I'll be thinking and praying for you.
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Old 06-28-2012, 11:55 PM #9 (permalink)
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Default Re: I think FALS is knocking at my door.

Thanks for reading my post....... I am a very happy person and possitive throught out this tramatic reality. I spent years in depression and pushed alot of loved family and friends away with my negative thoughts early in my life. I woke up some time in my twentys after a long greiving process. I realized i can't contol my fait and accepted it. I have taken the proper steps to protect me and my family. I have insurance and it gives me great relief. When my father was sick and didn't tell anyone he was sick; he asked me a question. The question was what would you do with the knowlegde if you knew you were dying. My response when I was 19 was" I would live my life and hold no bared". He said" why are you waiting to live your life the way you want, and waiting for some kind of altimatum to change that......" There was more to our conversation that night and I took it with me. Not that day but years later I understood. I don't need an aswswer about my possible diagnoses today or years from now. I want to move forward and relate to people who may have regrets after they were diagnosed and what they would do differently. I know time is a comoditty I might not have. I feel it in my heart. God is with me. I am just at the tip of the iceberg here and I know my doctor may tell me I have a pinched nerve or I am not fitting the protical, but it doesn't change a thing. To live like you are dying is a gift. I accept it........... What would you have done different?
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