Not officially diagnosed with ALS

[Faith101]

Hello...I am new to this so I hope I do this right. I have been
reading everything on this site for days. I am pretty sure my my mom has ALS, although we have not been offically diagnosed. Her symptoms started over a year ago,when I talked with her pcp, he told me she was crazy and it was all in her head, Until I pushed to get some testing. The choking was so scary, we were shopping one day she started to choke, I thought I was going to have to call 911! Her speech is failing, she really does not talk a lot anymore. She is not aware of what her neurologist is thinking, we had more testing just on Friday. But everything I have read leads to ALS. She has tongue tremors, weight loss, choking, cannot swallow liquids, eating is a chore but she is still eating good, she seems to be out of breath always, she did cry a lot over the top. Her dr told her she was depressed, and put her on something, she does not cry at all now. Her muscles seem to be ok. It is all so scary, but to read some of the stories on this site gives me hope. I know I should wait for the offical diagnosis, however when the neurologist mentioned ALS, I started reading everything. I have not stopped the research. Mom is the primary caregiver for our brother, he is mentally challenged, and our dad who is in the early stages of Alzheimer's. I feel the road ahead is going to be both amazingly tough and scary...I know I have to trust God will hold my family tight..but I am scared and nope just scared!

 

[dartman]

Faith101

Sorry for your dilemma. It reminds me of my new favorite joke. I've changed it a bit to suit PALs situation. It's from "The Big Bang Theory" on TV. Stephen Hawkins, a physisist that has had ALS for about 40 years made the original joke.
Question: What does ALS and a black hole have in common?
Answer: They both SUCK!
I am new here but you have to go through all the tests. It could be Lyme disease, Myathenia Gravis or something else. Good luck and God Bless.

 

[Atsugi]

ALS is so rare and there are many other choices which are not fatal. So try not to think the worst while you're waiting for the neurologist to make a final diagnosis.

Good luck.

 

[debra6004]

I still have the diagnosis of "probable ALS" and at my last visit the drs. said there were red flags that I don't have it. However, I have progressed from cane to walker to scooter/wheelchair. I just got braces and can walk a short distance with my walker. Anyway, my point is that I don't think the drs. always know when it comes to neurological issues.

 

[notme]

Sorry you had to find us. The doctor should not have mentioned ALS until there was a confirmed diagnosis--and by law, he was obligated to tell your mother.

There are some very good ALS clinics that specialize in neuromuscular disease.That's where you should check into having her seen if you want definitive answers by those that know what they are doing.