Yet another newbie with questions

[maxv]

Hi,

I'm new to this site and am here probably because I've read way too much stuff on the internet and have gotten myself scared silly :lol:. I want to say thank you so much for this forum, it has been an eye-opening place and really helpful.

I also want to say that while I have some symptoms that could be ALS, I recognize they could be a bunch of other possible things. I'm getting an MRI next week and have waiting very very anxiously.

I'm really curious as to what others experienced as their first symptoms of ALS, if diagnosed with it, if you don't mind sharing. I've read through quite a lot of posts but didn't find just one with PALS' stories (sorry if I missed!).

My symptoms are:

- left arm has become somewhat weaker than my right. A month or so ago (fairly recently), I noticed that I had tingling/numbness sensations. I also have some burning sensations. So far I'm still able to do everything with my arm/hand. The doctor thought there may be something up with my ulnar nerve after he checked it out.

- swelling in my left ankle for several months now without stop with tingling sensations, some burning and sometimes some pain and stiffness. I can't tell yet if it is weaker than the other leg.
I've elevated it, iced it, wrapped it, etc and it doesn't go away. I thought it was attributed to the swelling but now I'm not sure.

- also get the muscle fascilations (sp?) that can't always be seen in both my left arm and leg as well as other spots but not too often (I'm not really worried about that).

- these symptoms did not come on suddenly, but rather subtly (especially the leg)

- I've also noticed some dizziness that may or may not be associated with my arm/leg issues (and I've read enough literature that dizziness is not an ALS symptom), which could indicate that this is an other disease/disorder.

So some questions:

1. What were some of your first symptoms if you've been diagnosed with ALS?
2. Are burning sensations, pain and swelling (edema) at all associated with ALS?
3. What is the diagnosis process like? I've heard it can take a long time.
4. Is it common for one side of the body to go through the symptoms together?

I know that I am not going to get any kind of diagnosis from the internet or any one here but I'm just trying to get more information, so anything you have to say is very helpful.

Thank you so much for reading (and responding if you do). I wish all of you the very very best.

Cheers.

 

[BethU]

Hi ... just to get you started: Are burning sensations, pain and swelling (edema) at all associated with ALS?

No. Those are not at all associated with ALS. They are a pretty good indication that it's not ALS.

About diagnosis: If a neuro suspects ALS (which s/he wouldn't in your case, I'm pretty sure) it is a process of ruling out a kazillion other conditions. The ruling out process would include MRIs, blood work, EMGs. and lots of bonking with little hammers and touching your nose and walking around on your tip-toes, etc.

 

[maxv]

Thanks!

BethU,

Thank you kindly for the information. One other thing I'm curious about that I didn't ask before: is tingling/numbness associated with ALS at all? I don't remember seeing it from the literature I've read on ALS so I thought I would just ask.

Again, your help is much appreciated. I think people gravitate towards forums like this because it gives a chance to actually communicate with people about the disease, rather than simply reading every medical page out there with general information (and often not the kind of detail that real people can give). Being able to hear from others really is a gift.

Happy holidays.

 

[BethU]

Hi, Maxy ... Burning, tingling, numbness are not symptoms of ALS. Forget about ALS.

From the little I know, these could be characteristics of other diseases, so you need to check them out. But they are NOT ALS, so you're home free on that one.

Take care.