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New member
Nov 16, 2007
Learn about ALS

I am a 43 year old female, married with 3 children, ages 14, 11 and 9. For the last several months, I have been fighting sever fatigue and muscle spasms. The spasm occur all over my body, but are terrible in my ribs, both front and back, my neck and jaw every time I yawn, my legs and shoulders, etc. I can't hold stuff for long periods of time, or short periods for that matter. I have problems drying my hair with a blow dryer, because my arm gets too tired after about a minute. It is painful for me to walk distances of any kind, and I find myself shuffling instead of walking after sitting or laying down for a bit. I can no longer open bottles of water or jars of food, etc. When at my doctor yesterday, he asked me to open my mouth and barely stick out my tongue. He did this three times. He told me my tongue twitches and he didn't want to scare me, but with everything else that has been going on with me, he thinks I may have ALS. He ordered blood tests, which should be back sometime next week. In the meantime, I am scared thinking about this, I feel like I am getting weaker and weaker, but I don't like to say anything to my husband, because he thinks I am being a hypochondriac. YES, he can be a jerk at times. He was the same way with my thyroid, until they discovered it was cancer. Then he was falling all over himself apologizing for not listening to me that I wasn't feeling well then. I have not even told him the doctor suspects this. I told my niece, who is an RN, and she is hoping the doctor is wrong (it is her doctor too), but she is trying to get more info on the disease.

I don't want to tell anyone else in my family right now, because they will say the doctor is nuts, and doesn't know what he is talking about, and I need to find another doctor.

I am definitely scared right now, and I wish I could figure out another reason for all that is happening with my body right now. I was tested for carpal tunnel because of the numbness and cramping in hands, and I have a 30% noted loss of use in both hands. Now, is it really carpal tunnel, or ALS. I have discomfort and spasms all the way up to my shoulders. I also have a lot of pain in my feet. Is this normal? I don't know. So many questions, but what do you really do until you know for sure? What is the chance that all this is going to add up to ALS, and if so, then how long do I have before...? Don't want to think about it.

Anyway, I would appreciate any help or comments I can get on this subject.

Thank you all sincerely in advance for being there. :

You will get alot of support on this forum, you don't have to go through this alone.
Sometimes it's easier talking here than to your family because everyone is going through the same thing
and knows how you feel.
Alot of things need to be ruled out before anyone can say it is ALS. There are alot of things that mimic ALS.
Did your family Dr tell you this, I hope he gave you something for anxiety.
For your saniety, call the nearest ALS clinic or MDA clinic for an appointment.
Don't forget this forum is open 24/7. Hang in there.
Thank you.

Thanks Crystal. I am already on anxiety medication. My family doctor was the one who told me. He has been trying to figure out why I have the muscle spasms so bad, and why I am fatigued all the time. He did some blood work two weeks ago, and all my electrolytes came back perfect. Everything was right on the money. Then he decided to check this tongue thing, and then ordered more blood tests. Now it is a waiting game. With the holiday next week, it will most likely not be until the following Monday before I know something.

I will definitely stay on here for support. My family is supportive, but probably scared like when I had thyroid cancer. At least that was treatable and beatable. I still hope and pray that my doctor is wrong. I will let you all know.

Thanks again.
adi, good luck! Praying to God it turns out to be something treatable. God bless!

I agree with Crystal that you need to get an appointment at a ALS clinic as soon as possible. You need a doctor who specializes in motor neuron diseases to do thorough diagnostic procedures including an EMG and MRIs of brain and spinal cord to rule out all other possibilities. A family doctor, no matter how good they are, probably won't have the expertise to give you a diagnosis.
If there is no MDA/ALS clinic near you, you could still get an authoritative opinion from a neurologist--not just any old neurologist, but one who specializes in neuromuscular diseases. You can find one by calling the nearest university teaching hospital, asking for the neurology department, and then requesting a referral to a neuromuscular-disease specialist.

Here are the MDA/ALS centers in Arizona, in case either one is a reasonable distance from where you are:

(602) 406-6262
(602) 406-4608 FAX
E-mail: [email protected]
Dr. Shafeeq Ladha, MD, Director
St. Joseph's Hospital and Medical Center
Barrow Neurological Institute
500 West Thomas Road
Suite 710
Phoenix, AZ 85013

(520) 626-6609
(520) 626-6925 FAX
Email: [email protected]
Lawrence Z. Stern, M.D., Director
University of Arizona
Health Sciences Center
1501 North Campbell Ave.
Tucson, AZ 85724
Hi Adi2uds. I am sorry to hear about all your troubles. I hope you get to an ALS clinic and I hope they have something good to say. We will help in any way we can...Cindy
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