Maybe ALS? Please Help- Need Advice and Awnsers

[CB1977]

Hello- First, thank you for taking the time to read this and offer me some advice. I am currently confused and very worried about my health Here is the current situation-

I am a 31 yr old male, in great shape, dont smoke or drink. 2 months ago i started having the following issues and I need to know if this sounds like ALS. I have the following questions-

-Very, very tired ( I wake up feeling tired after getting 8+ hrs of sleep)
- Muscle twitches all over body including face. Started off bad (15-20/minute) for first 2 days, now are contant but not as frequent. (I have had these for about 3 weeks)
--Pain in neck muscles(front and sides)
-Spasms or twitches in my esopphogus and i think my trachea and inside my upper chest
-When I talk a lot my voicebox starts to ache and my voice gets weak
- Tounge also has twitches that I can see, but not really feel
-I feel like I have something stuck in my throat sometimes
-I dont have any specific arm or leg weakness but my whole body feels tired and weak and have not had enough energy to work out since June
- Because I am so tired my mind feels clouded, not sharp.

Here are the tests I have had

CT Scan on head- normal
X-ray on neck- normal
Endoscopy (upper GI)- normal
CT on kidneys- normal
Bloodwork, Complete blood count, sedementation rate- normal
Urine- normal
Some small nero tests to test reflexes and strenght and such.

Here are some questions I have-
How fast do the ALS symptoms progress and in what order?
Is there pain in muscles with ALS?
What is the first signs?
If this does not sound like ALS, does it sound like something else that you have heard of?
Whith ALS, will the symptoms get bad then let up , then bad again are is it a steady day by day progression from bad to worse?
What is the average time is takes to diagnose somthing like this?

Once again- thank-you so much for any feedback, Its going to be a month before I see a specialist and I am somewhat worried.

 

[BethU]

Here are some questions I have-
How fast do the ALS symptoms progress and in what order?
Is there pain in muscles with ALS?
What is the first signs? If this does not sound like ALS, does it sound like something else that you have heard of? Whith ALS, will the symptoms get bad then let up , then bad again are is it a steady day by day progression from bad to worse?
What is the average time is takes to diagnose somthing like this?

Hi, welcome to the forum. I'm sorry you are having worrisome symptoms, but glad you found us. You'll get some answers from some really smart people on this forum, but I'll put my two cents in just to get you a quick reply.

The symptoms can start anywhere ... in an arm or leg, or with speech & swallowing problems. And there is no way to predict how fast anything will progress. You'll hear this again and again, but it's true: Every single case of ALS is different. For most people, the onset is very subtle.

There are so many neurological diseases that mimic one another, it is impossible (for me) to say what else it could be. ... there are too many choices.

In my own experience, symptoms can vary in intensity ... I have had periods where symptoms pretty much disappeared, and periods where they seemed to get worse, then improved again. Generally, however, over the long run, the symptoms will get worse.

As for diagnosis ... the way neurologists diagnose ALS is to eliminate everything else under the sun that it could be. That means many tests and doctor's appointments. It's a long, long process.

In my case, it was 2 years, 2 months after the symptoms started before I got a firm diagnosis of ALS.

Hang in there!
BethU

 

[CB1977]

Thanks BethU

BethU, Thank you for the quick reply.

One more question.....What about the pain? I have pain in my back, neck, and inside my upper chest. I also have some breathing issues, like in the middle of a breath i will have a spasm in my chest every now and then.

I forgot to mention one thing, I had some symtoms that my doctor diagnosed as prostititis a l;ittle over 2 months ago? After being on Cypo for 10 days, and still being so tired and having pains, my doctor said I could have a virus and that the chest and throat spasms could be from indigestion and heatburn. Can a virus trigger ALS or MS or flat out attack your nerves and cause these symptoms?

Thanks again!

 

[BethU]

Hi ... I have had a few muscle aches since my ALS symptoms started, but I don't know if they were connected to ALS, because they occurred in places where I don't have any symptoms or weakness, like my legs and shoulders. In both cases, they happened regularly for a little while ... I'd wake up with aching legs, and it would go away by breakfast ... then they stopped completely. So who knows what they meant?

I don't think there's any causal link established between ALS and viruses, or anything else for that matter. Researchers don't know what causes it.

Can you get in touch with your doctor before your next appointment, and ask him about these issues? He's the one who would know what they might mean. Otherwise, I'd suggest keeping track of your symptoms so that you can ask him when you see him.

BethU