Worried...ofcourse I am Im on an ALS site

[Momof1]

Hi I just had a few quick questions. Are tremors a normal presenting symptom of ALS. Not just hand tremors but shaking tremors that can be all over the body. They become worse with using muscles and after activity. I have done so many strength tests in the last 2 weeks I cant stand to do anymore. I get up every morning now and stand on one leg and go up and down on my tip toes 10 time and do 20 knee bends. Now I do these things but sometimes it harder than others. I just want to know if I had ALS could I still be doing these things. The tremors and shaking started in November. I have had CTs and MRIs of my brain all normal. All blood work normal. I even had a CK level checked which was normal. Wouldn't a CK level be elevated in someone who has ALS if they were already starting to have shaking or tremors? I have alot of muscle fatigue and some awkwardness and stiffness in my fingers and hands when typing and sometimes my tongue even gets shakey and feels kind thick and awkward. I know people come on here and ask these types of questions all the time. I dont want anyone to think Im crazy Im really ecxperiencing these things and didnt have anxiety until the shaking in my shoulders and arms started and are now in my legs. If I lift my leg in front of me from a sitting position it will kinda shake. Sometimes I will have an arm or leg just jerk for no reason like one big jerk. I have an appt with a neurologist in February but I just wanted to get some advice. Thank you in advance for you help.

 

[mjkerkau]

You'll get other replies from actual PALS i'm sure, but for me, my symptoms were all over the place (like yours) and they assured me that this is not a typical ALS presentation.
Also wondering, what is your age, and I'm guessing you've not had an EMG done yet?

 

[Lavender Lady]

It is not the usual first symptom to have muscle twitching or weakness to be all over your body. Typically it starts in one limb or bulbar with speech and rarely diaphragm. Having the symptoms you describe does not sound like ALS. It is something you should seek medical help for to figure out what is going on. Best of luck to you.

 

[Momof1]

Mjkerkau,

I 32-years-old and no I havent had an EMG yet. I cant get into see a neurologist until February. I gotta tell ya Im so sick of worrying I cant stand it. Do you have ALS?

 

[abbas child]

Mom of 1, "I get up every morning now and stand on one leg and go up and down on my tip toes 10 time and do 20 knee bends. Now I do these things but sometimes it harder than others. I just want to know if I had ALS could I still be doing these things."

You're clear and can stop worrying about ALS. You could not do this with legs affected by ALS. Shaking and tremors all over is very unlike ALS, which presents with weakness. As in "clinical weakness", not perceived weakness. You cannot get your toes raised at all, or your heel raised at all. And, it would be one foot, not both. Shaking and tremors are pretty meaninless in diagnosing ALS. Everyone twitches, we're told. Twitching isn't even questioned when we see a Neurologist for an evaluation.

I don't know what is going on, but I encourage you to read both sticky posts at the top of the "Do I Have..." page, https://www.alsforums.com/forum/do-...might-have-amyotrophic-lateral-sclerosis.html and https://www.alsforums.com/forum/do-i-have-als-als/14118-support-forums.html

I hope that you read these and will have peace about your condition.

Best wishes,
Ann

 

[Momof1]

Thank you Ann! You have given me some peace. I appreciate your time. You seem like a very kind person. I will pray for you everyday. One thing about this is that it has made me so aware of a terrible illness that I never knew anything about really. I work at a cancer center and see some bad stuff everyday, but this disease seems to be so much worse than even the worse that I have seen here. I dont understand why there isnt more being done to help people. There is constantly research being done to help find new treatments and cures for cancer. I guess maybe it has to do with the number of people with cancer compared to the number of people with ALS. Regardless of how many people it affects each year something so awful should be on everyones number one priority list in my opinion. There needs to be more ALS awareness!

 

[TedH5]

Ann and everyone else has given you great advice. As others have said it typically starts in one limb or else in the Bulbar region. If you are doing all of the exercises you described then that definitely points away from ALS. Obviously we are not Dr's and your Neurologist will be able to answer your questions more comprehensively, I would definitely put ALS out of your mind.

Good luck and enjoy being a Mom!

 

[AndyDJX]

Hi Momof1,

I've been having symptoms for over 4 years and lately the tremors have been getting significantly worse. My facial muscles especially; if I make any kind of expression (smile, frown, scrunched up face, etC) for more than a few seconds, my facial muscles will shake. Also, minimal amounts of exertion will make my hands or legs shake significantly.

The bad news is that it's been getting worse over time, verrrry slowly but surely. The good news is that it's probably not ALS. By probably, I mean I'm almost certain it isn't.

We can have screwy muscles and symptoms, but don't jump to conclusions, especially without a proper review from a qualified doctor.

Best of luck, and try not to worry too much.

Andy

 

[abbas child]

Mom of 1, Thank you for your prayers, and also for the kind thoughts. Have you ever watched "Wit"? It has to do with cancer and research from the perspective of a patient who is brilliant as a scholar and professor of John Donne ("Death be not Proud" is a recurring background). Tough, brilliant movie (and witty and funny). I could never make a choice with these diseases.

I hope that your problem is resolved. Not knowing is its own form of misery and can be extremely overpowering. God Bless you.
Ann