Can it be?

[thatscooper2u2]

I don't want to be here and I don't want to ask questions. But I am here and currently being examined for the possibility of ALS.

My husband swears its not ALS and I pray its not, but I came here hoping to find people like me who are scared and just need advice.

I have been having hand tremors, hand weakness, fasculations (spelling)? very pronounced in my left hand and somewhat in my right. Its been going on over a year and within the past 6 months I started getting Charlie horse's if you will in both hands. I do have weakness in both hands and have lost strength but nothing yet were I cannot use them. I had a normal NVC and EMG is questionable so now I am off to a specialist for ALS is Dallas to render a diagnosed as my neuro says its probable.

I read your posts and I feel like it cant be, but your not friend google leads you back to saying --why yes "that's it".

The neuro says its not usual to be just systematic in the hands only, and also stated it could be ALS and only affect my hands and never progress (that doesn't make a lot of sense to me).

Scared, confused. Sorry if this not appropriate to be here, didn't know where to go where people would understand.

 

[affected]

Hi,

It would be an unusual presentation, especially going on for so long without progressing.

You are doing exactly the right thing by getting over to an ALS specialist that can do the best diagnostic process for you.

I really would suggest you are better off trying to stay open to all possibilities of this being anything else and let the doctors do their job. It can take a while and is frustrating, but finding out early isn't really of any benefit either.

Please try to just stay positive and stay off Dr google and places like here to keep your anxiety as low as you can while the process happens.

All the best with your neuro

 

[thatscooper2u2]

Hi,

It would be an unusual presentation, especially going on for so long without progressing.

You are doing exactly the right thing by getting over to an ALS specialist that can do the best diagnostic process for you.

I really would suggest you are better off trying to stay open to all possibilities of this being anything else and let the doctors do their job. It can take a while and is frustrating, but finding out early isn't really of any benefit either.

Please try to just stay positive and stay off Dr google and places like here to keep your anxiety as low as you can while the process happens.

All the best with your neuro

Tillie

Thanks Tillie for your reply. You are right, DR Google is horrible and needs his license revoked ASAP.

Staying open but truly scared. I appreciate your support and will keep all posted.

 

[skipper66]

Who are you going to see in Dallas? My dad goes to a ALS clinic there and see's a Dr. Heinzman (sp?). They have been wonderful to him there.

 

[thatscooper2u2]

That is where I am being sent. Very VERY worried.

 

[skipper66]

Please try to relax because worrying about it is going to only lead to anxiety and it won't change the outcome one way or another. I'm thinking since your progression seems to be very slow that it points away from it being ALS related. Please try to stay off here and Dr. Google until after you get results from your doctor. When is your appointment? Try to get some rest now. Listen to some relaxing music or take a nice warm bath. Kim

 

[gooseberry]

It is normal to be scared when having a health issue. When do you see Dr. Heinzman?

 

[Dusty7]

What did your "questionable" EMG say?
How many muscles were tested? How many showed insertional activity or fibrillations? Fasciculations? Which ones?

 

[AfraidButNotAlone]

May God bless you and keep you close to His heart.

 

[MaxEidswick]

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


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Max - Monday, August 18, 2014 12:03:01 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

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