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rbeer

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Joined
Aug 3, 2017
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5
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Loved one DX
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US
State
CA - California
City
Alamo
Hello to all. I am thankful for having a forum like this.

My dad was dx with bulbar ALS nearly 3 years ago at the age of 72, and I am grateful for every day he remains with us. He is presently on a ventilator but still has control of his arms to write, so he comunicates with us very well.

Me, I am a 52 year old married man with two wonderful teenage daughters. I am a white male with our family being of European descent. We have performed no testing for FALS, since there was no prior Hx and relatives including my father's parents lived into their 80s and 90s both dying of heart failure.

The reason I am posting is frankly because I am scared. Two months ago I began having numbness and occasional pain in my toes, and nerve pain in my feet (left primarily), and burning sensation on my shin. I have constant fatigue. My calf muscles always feel tight and I feel occasional spasm in my upper legs. Something of a neurologic nature is occurring, but I did not think ALS from what I know of the disease. That is until Monday.

While sitting at my desk I began experiencing fasciculations in my calf muscles. Very light but in multiple places. These are almost constant now. Sometimes a random one will happen in my feet, upper leg and on rare occasion in my arms. I have perceived feeling of weakness but I can't tell if there is any marked atrophy, since I don't spend much time looking at my legs. Even with all this, I wouldn't be thinking ALS except that my dad has it.

I am scheduled for my first EMG later this month. I have all the blood tests imaginable to discount other conditions, especially immune system disorders as well as Lyme. I am writing to more or less get this off my chest as my primary worry is my wife and children, and the burden I could become to them.

Doctors so far are of little help as they are going through the process of elimination. We are now getting to the neurological stage to see what is wrong.

I guess my main question is: Is there any cutting to the chase? To those of you who have gone through this, what do you recommend?
 
1) Please read the Sticky post titled 'Please read before posting'. Pay particular attention to the 'ALS is about failing not feeling' part

2) Get the EMG if you're still worried after #1
 
I read the post. I guess I am looking for some help in discerning whether what I am experiencing (given my dad's condition) is consistent with the onset. I suspect falling is not going to happen until after muscle weakness and one is sometime along with the disease. He had bulbar so I can pinpoint when his voice changed and the progression from there, but he had no failing, falling or anything for almost 1 yr. No fasciculations in legs until 6-8 months after voice change.
 
You can not compare bulbar onset symptoms to limb onset. They don't translate. So yes the initial limb onset symptom is most commonly a failure- can't do up a button, tripping over nothing over and over due to foot drop, can't go up on tippy toes clinical weakness and failure are early and usually presenting signs for limb onset.

I trust you have been told with one relative only your statistical risk is very low- just over that of the general population.

There are no shortcuts to the workup even someone with a documented genetic defect with high penetrance ( meaning almost certain to get ALS sooner or later) has to go through the process. The EMG will give you a lot of information along with the neurologist and their clinical exam
 
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Can't speak for anyone else.
My onset was in my left (dominant) arm. No pain, no burning, no numbness. It FELT fine. I just couldn't DO anymore (writing, buttons, key locks).
Keep following up with your docs!

Angie
 
Thank you for having patience with me. When you see this happen to your father and then have some symptoms associated with the disease it can be a bit disturbing.

I wish all of you the best.
 
It is really common for family members ( even non biological ones) to fear ALS and even become hypervigilant. If you have not been exposed to ALS before it is shocking and eye opening. We understand and sympathize.
 
I totally disagree - your father DID have failing as a first symptom - his voice changed because his tongue began failing. We stand by what the sticky says - ALS is about failing.

My husband was bulbar onset and he felt totally normal while his voice and swallowing ability failed on him.

I'm so sorry about your father - remember you should be concentrating on him and you have no more chance of developing ALS than I do. All the best.
 
Same type?

If it is fALS, is it always the same e.g parent has bulbar onset so that's what children would expect to see?
 
Mod note: Just keeping all your posts together in a single thread to make it easier for forum members to follow your posts. Please keep posting here.
 
Hello again. I am getting EMG at end of month. Fasciculations in calf muscles, mainly left with some in right. Over the weekend I started getting them sporadically in left bicep. Both calfs fell tight without having exercised. Constant feeling. Occassional muscle contractions in upper leg and I had a 1-2 in gluts. This is all very scary to me as I am a former athlete and very in tune with my body. Scarier is what happens to my family if I can't work anymore since we are in CA and won't be able to afford house. No disability insurance since I work for a small company. If worse case scenario I'm trying to plan ahead but am a little lost. Thanks for letting me vent.
 
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