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canadian1000

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Sep 16, 2015
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Learn about ALS
Country
CA
State
Nunavut
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Iqaluit
Hi guys,

After reading hundreds of different threads written by people who think they have ALS but don't, I was really struck by the amount of compassion and understanding ALSForum regulars have in dealing with the sometimes, hypochondriac thoughts of these people.

I too, think I may fit into that category of being a hypochondriac, but due to missed diagnosis' in the past which were later found after visiting many different specialists, I feel like my hypochondriasis isn't so unreasonable.

Here's my question that I was hoping someone could answer for me:

Since early February, I have had excess saliva, followed by sore throats and what seems to be an aching pain under my adams apple that comes and goes with the sore throats. I am being treated for GERD, have had an upper and lower endoscopy, but have been told that everything is good.

Recently, I began having hoarseness in my throat and an inability to speak after about 15 minutes of conversation. My thumb and index finger (right hand) have been twitching for the past couple of months, in conjunction with twitching (less common) that takes place in other parts of my body. At night time, the same hand and arm goes numb while I am laying down and it takes about 15-20 minutes to find the right spot so that it isn't twitching and tingly. Frequently I feel weakness in the same hand of the twitching, but I can't say for sure if that weakness is true weakness, because I can still open bottles, I can still unscrew lids, and I can still squeeze pretty tight with my thumb and index finger. I have also lost about 15 pounds without trying (which is also concerning me, although I think it might be the result of my anxiety.

With all of that said, yes, I do believe I have health anxiety. The rational side of my brain is telling me this is the case, while it was the irrational side of my brain that brought me here to this forum. I have already scheduled cognitive behavioral therapy sessions (12 in total) to help me deal with this anxiety. I have also scheduled an appointment with my doctor tomorrow to discuss whether or not these problems with my hand are the result of carpal tunnel syndrome or something more sinister.

But for my own sanity, can someone review my symptoms and if you don't think they have anything to do with ALS, can you explain to me why?

Thank you for your time and understanding!
 
Not ALS.

Your first set of symptoms>>>Since early February...everything is good.
has nothing to do with ALS.

These symptoms>>>Recently, I began...result of my anxiety.
are in common with many more common diseases.

Your plan
>>>behavioral therapy sessions...appointment with my doctor tomorrow
is a good one.

I agree you should look into your symptoms with professional help. But you don't have ALS to worry about.

Frankly, while reading your post, I kept thinking "Why in the world would this person think they have ALS?"
But I realize that a lot of websites, including medical sites, list these symptoms. But there are nuances that perhaps only people personally familiar with ALS can recognize. Your symptoms don't say ALS. Don't sweat it.
 
You are right, my thought-process doesn't make much sense, but I did end up finding this website after viewing ALS symptoms.

I should have also mentioned that I carry the rs2814707(A;G) rs3849942(A;G) genes, which put me at a 1.2x higher risk factor for sporadic ALS. Knowing this fact certainly doesn't help my thought process!
 
Genetic Test

Can someone explain to me what this means exactly:

I carry the following two genotypes: rs2814707(A;G) rs3849942(A;G)

According to what I have read, they are responsible for an increased risk of developing sporadic ALS. With that said, my test stated that I was at a 1.2-1.4% increased risk of developing the disease.

While that may sound straight forward to you, can someone explain to me what this means? Does that mean I will develop ALS during my life time or does that mean there is a strong likelihood that I will?

Thank you
 
Re: Genetic Test

No idea sorry, but you are only to post in your DIHALS thread.

You don't have familial ALS, you have been answered that what is happening with you does not even sound like ALS.

Our mods will move this post to your thread. Please go and read the stickies about the rules here as a guest.

You see, our members who do have ALS have huge fatigue, often cannot use their hands and are using their eyes to get around this forum. So in respect for them, you need to stay in one thread so your story can be followed. Even our mods have ALS, so their service to this community is beyond incredible and we should make things as easy for them as possible.
 
Your increased risk is actually quite small if any at all. Where did you get that info? Did you do that gene sequencing that people could buy over the internet? I know people for real FALS genes who did it and were told their risk of ALS was lower than average. I know they based the comment about the 1.2 upon old research that never seemed to go anywhere but if you just take that number as read it means if the risk in your whole life of developing ALS is 1 in a 800 ( a number that was given to me by an als researcher for the general population) if you take 800 people 1 will get als SOMETIME before they die. If you take 800 people with a 1.2 risk 1.2 people will get als. 798.8 won't. Ever. Just serving in the military doubles risk so they are 2 in 800. Having my gene defect means out of 100 people 96-100 of us will get als depending on which doctor you talk to
 
Thanks, Nikki, for making that very clear. Good information.
 
Thank you for your help everyone. I truly appreciate each of you taking the time to respond to my concerns.

While I still have the same fears that I had on the day I initiated this thread, I have noticed that my "twitches" are not as severe as they were before. (During that time, I have had twitches in other parts of my body as well.)

Although I still don't know the cause of these twitches or the tingling sensation that I sometimes feel in my hand and forearm, I hope that the cognitive behavioral therapy will help me eliminate my fears going forward.

I guess hoping for the best is all that I can really do!

Thanks again!
 
Not ALS.

Your first set of symptoms>>>Since early February...everything is good.
has nothing to do with ALS.

These symptoms>>>Recently, I began...result of my anxiety.
are in common with many more common diseases.

Your plan
>>>behavioral therapy sessions...appointment with my doctor tomorrow
is a good one.

I agree you should look into your symptoms with professional help. But you don't have ALS to worry about.

Frankly, while reading your post, I kept thinking "Why in the world would this person think they have ALS?"
But I realize that a lot of websites, including medical sites, list these symptoms. But there are nuances that perhaps only people personally familiar with ALS can recognize. Your symptoms don't say ALS. Don't sweat it.

Thank you, Atsugi. Just for clarification, I had convinced myself that I had ALS due to twitching that was taking place in my thumb and index finger (right hand). My twitches didn't start and then continue on for hours or even minutes, they would literally happen once in an instant and then repeat maybe 15 to 20 minutes later.

But, I really am starting to believe it's all in my head! What a coincidence it would be if, after several months of health anxiety over every issue you can think of, that suddenly I correctly diagnose myself with something based on a twitch. :oops:
 
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