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Mommi2One

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Joined
Jul 25, 2008
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Learn about ALS
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US
State
Ohio
City
Clarksville
Hi!
I am fairly certain I have ALS and just need to talk to someone who may have/may be going through the same things because I FEEL this, but no one can SEE it.

I am having internal tremors 24 hours a day. My entire body shakes inside, but you can't see it when you look at me. Also, my tongue is numb from the tip to the middle and I cannot feel my lips at all. I am not slurring my speech but I cannot talk as fast as I used to or else I "trip" over my words.

My maternal grandmother died of ALS 22 years ago. Back then they really didn't know much about it and she went undiagnosed for three years. I've read the statistics and FALS is fairly rare, but with my family history and these symptoms, I can't see how I could deny what looks obvious.

The internal tremors started about 2 months ago and were sporadic, sometimes only lasting 2-3 minutes. I didn't really even think much about it until the morning I woke up and they continued all day long - and have not stopped since (this was June 10th). I noticed the tip of my tongue being numb on June 11th. Now my tongue is numb from the tip to the middle. After I started to put things together, I realized my lips have been numb for about 6 months, but I thought I was just fighting a bad case of "chapped" lips. It wasn't until the other symptoms made me stop and think about it that I realized they didn't feel dry, they just feel "funny".

I visited my family doctor who agreed I have reason to worry. She wants me to make an appointment with a neurologist, which I will do as soon as my husband and I finish reviewing our financial picture to make sure we have things aligned in the event I need full time care eventually.

I don't want to talk myself into this, but I also feel like I can't ignore the facts. I have a strong faith and am not worried at all. I have a sense of peace, but at the same time I am curious how things progress so my family and I can be prepared.

I just turned 35 and have an 11 year old son. My husband knows about this and has been unbelievably supportive. It's just difficult because I "look normal" and he can't see what's going on inside my body.

Thoughts? Did anyone else start out with symptoms similar to mine? What was the road to diagnosis like?

All my best,
Mommi

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Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
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Alabama
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Mobile
What A Lady

I don't want to talk myself into this, but I also feel like I can't ignore the facts. I have a strong faith and am not worried at all. I have a sense of peace, but at the same time I am curious how things progress so my family and I can be prepared.

You and I sound so much alike. The only difference is , I know too much about this Disease. Get to the Neuro. Who knows, it may turn out different than you think. I really hope and pray for you that it does.

Lorie
 

dimd00d

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Apr 23, 2008
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Learn about ALS
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BG
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Sofia
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Sofia
AFAIK , ALS doesnt affect the sensory nerves, i.e. having numb body parts points away from it.
 

awieleba

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Apr 28, 2008
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oakland twp
I think you could be jumpung the gun on als. understandable so with your grandmother. It sounds more like MS than als. and MS has alot of new treatments and people live a long time with it. Maybe you should go that angle not als. If those are the only symptoms you have, it sounds more like a sensory issue not muscle disorder. Good luck and get that neuro!

april
 

tmasters

Senior member
Joined
Feb 19, 2008
Messages
531
Reason
PALS
Diagnosis
08/2008
Country
US
State
California
City
Anaheim
Hi!
She wants me to make an appointment with a neurologist, which I will do as soon as my husband and I finish reviewing our financial picture to make sure we have things aligned in the event I need full time care eventually.

All my best,
Mommi

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Don't wait. Whether or not your long-term financial picture affords full-time care is irrelevant to your decision to see a neurologist today.

Who knows, your neuro, may find some treatable condition to explain your symptoms. If possible, you need to put your mind at ease.

Wishing you all the best. Keep the faith,
-Tom
 

alsrelative

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Joined
Jul 25, 2008
Messages
1
Reason
Loved one DX
Country
US
State
tx
City
houston
Hi.
I do not know if you have ALS or not. I agree with the others that you should seek a neuro immediately. Do not wait. You may always apply for medicare IF you are diagnosed with ALS. Also, my step-dad was diagnosed with ALS AND a nerve degeneration disease. He is losing feeling or having numbness in his foot. However, the ALS began in his speech and swallowing. I will say a prayer for you and your family!
ALS Relative
 

Mommi2One

New member
Joined
Jul 25, 2008
Messages
6
Reason
Learn about ALS
Country
US
State
Ohio
City
Clarksville
It's so hard to describe how my tongue and lips feel - I use the word "numb" but it's not that, really. My sense of touch is not impaired, it just feels like a constant tingling sensation. I also have muscle fascilations everywhere (mostly my feet and ankles, but sometimes in my abdomen, biceps and face). These are sporadic and may happen 2-3 times/day. My legs and arms feel "tired" all the time (like when I stand for long periods of time, walk up stairs, or carry something) - Initially I thought it was because I'm out of shape, but now I don't know.

I'm going to make an appointment to see the neurologist, but I have to secure Long Term Care insurance first. I don't know what this is for sure - and I've been honest with my insurance sales person and given them full access to my medical records. I have an 11 year old son and a wonderful husband that I don't want to bankrupt trying to take care of me. I saw what my grandfather and mom went through trying to take care of my grandmother, and I don't want to put that burden on anyone, whether this is ALS or not.

I appreciate all the encouraging words and prayers. God is my rock and I couldn't deal with this without Him. Your prayers are so important. Please know each of you are in mine as well.

Mommi
 

planningguy

Senior member
Joined
Jun 5, 2008
Messages
556
Country
US
State
Wyoming
City
Sheridan
As a father of three I know that health issues can cut twice. The beauty of being a parent is learning to love and care for someone other than yourself. The challenge is that sometimes that responsibility can fuel additional worry.

For right now focus on working with a medical professional to find out what's going on in your body. There are many possibilities besides ALS that can cause the symptoms you describe.

Best of luck as you move forward, and welcome to a wonderful board.

Robert
 
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