scared, could use some input -- please help

[oh_so_scared]

Hello everyone, this is my first time posting. I am afraid that I have ALS and could use some input. And please know that I did not post earlier because if you are diagnosed with ALS I imagine the last thing that you probably want is someone crying wolf. Nevertheless, here goes...

It started with stiff ankles and achy soles of the feet in the morning. It didn't happen every day, and it would go away quickly, but that's what I first remember. Then before falling asleep my leg would feel funny and would sort of twitch (essentially I'd need to stretch my leg and toes). I have had this for at least a year, maybe 2.

A few months ago twitches started everywhere as well as a feeling like someone was poking me with a needle here and there. Then all of my joints started popping, something which never happened before.

Here's the more troubling stuff. My thumb and hand muscles are starting to 'waste' away. For you more technical guys, I have thenar and hypothenar wasting, which my sister and bother-in-law (whom are both doctors) both confirmed. Unfortunately, they kind of laughed away my worries since I am a 35 year old female.

I feel 'weakness' in my right side. So if I carry a plate to the kitchen in my right hand it feels more like I've been lifting weights rather than a plate. HOWEVER, when I do strength training at the gym or at home I can lift as much as I could before and as much with my right as well as my left hand. I just feel very tired VERY quickly on that side of the body.

I am a designer and I was devastated when I thought that I might have this disease. I thought, I am nothing without the ability to design, to paint, to create. But now that I have been considering ALS for a few months, the ONLY things which matter to me are my husband and my parents. I am 35 years old and I have waited for 30 years to find true love (we have been together for 5 years, married for 2). I am not ready to say goodbye to my husband. I am very sad and scared. How can my parents overcome this? My mother is my best friend, other than my husband. She is very strong but how strong can you be if your child dies before you do? And my father is not nearly as strong as she is.

Anyway, I'm sorry to go on and on. Please, if you have any thoughts, I would really appreciate them, even if you tell me that I am a fool and should stop worrying and/or posting here. I appreciate your honesty.

Finally, I have a neuro appt. on the 30th of January. And I have more symptoms, which I'll just list now, in case they're relevant: little tickly spots, roaming little pains, my arms seem to fall asleep quickly and sometimes I wake up with hands that have fallen asleep. I do not think that I have carpal tunnel (tested myself).

Thank you for your thoughts and I pray for all of you. Your postings have made me both laugh and cry, as well as feel grateful to be alive.

-- Anca

PS: Had severe vitamin D deficiency recently but the latest lab tests say that now I'm 'normal.' Haha. Since when are creative people normal anyway?

 

[Al]

Hi Anca. Welcome but sorry you think you need to be here. Most of your symptoms I think (not a doctor) point away from ALS. The good thing is you are seeing a Neuro soon. When you see him/her tell them your symptoms let them examine you and see what they say. Don't go in saying I think I have ALS. Hopefully you'll have answers soon.

AL.

 

[laurel]

Hi Anca,
I am not sure you can successfully determine whether you have Carpal Tunnel without EMG and nerve conduction tests. Sounds like you have lots of sensory symptoms. The thenar and hypothenar wasting could indicate Carpal Tunnel or CIDP. Nothing sounds like ALS. Report back after your neuro. appt. and let us know the outcome please. It is natural to be scared. My hubby has CIDP with the thenar wasting and forearm wasting and we were consumed with fear prior to his diagnosis. Good luck.
Laurel

 

[brendapals]

Anca,
Welcome, but I have to agree with Al-doesn't sound like ALS at all. Relax, enjoy your job and your family, and go to your neuro on the 30th. ALS takes months, sometimes several months, to diagnose-so you probably have nothing to worry about. Especially if you haven't seen a neuro in the last 2 yrs.
We're not doctors on here, so please trust the neuro you go to, and let us know what he or she tells you,
You are welcome here, but try not to worry so much!
The sun will still come up tomorrow!
-b

 

[brooksea]

Your symptoms don't sound like ALS, but I'm not a Neuro!

Hopefully, you will be able to report back to us after the 30th that you have good news!

Wish you luck!

 

[awieleba]

Anca

Hi, try to relax and you are doing the right thing by seeing a nuero.

I relate to your 'start' of this. That was how it was for me a year ago, with stiff ankles and pains in my feet. But I had the same feeling my wrists and hands as well. (I did not even think about als at that point)
I have the thenar muscle atrophy, my palms are more flat as well. (this bothers me the most) my thumbs and hands hurt/ache like a bruise all the time.

But here I am a year later, als specialist thinks that I dont have als. i am going for a 2nd opinion for diagnosed as I have some progressing sx. of something.

Be glad that you can still work out! I have not worked out in a year and I actually miss it ALOT!

Hang in there!

april

 

[oh_so_scared]

Still scared, but feeling a little bit better

Hello everyone. Thank you ALL for your posts, I really appreciated them. They made me feel a little more hopeful.

Al, I am going to do what you said and just state my symptoms to the neuro without proposing a diagnosis. I think that the docs feel threatened somehow if you do that. So, thanks for the advice.

Laurel, I am DEFINITELY hoping for Carpal Tunnel (I used to think it was called carpool tunnel).

Also, I should have mentioned that sometimes I am having a tougher time chewing. Nothing major, but it's there. And this is going to sound silly, but I was drinking water out of a plastic bottle. You know when you don't let any air in and the bottle kind of collapses a little as you drink the water? Well, I did that and my tongue hurt. That's new too.

April, my hands also hurt most of the time like a bruise, just like you. In my case, I think that it's because I have been on my laptop a lot lately. But even if that's the cause, it shouldn't be happening. I have read a lot of your posts April. I really hope that you will find out that you have something minor soon. In the meantime, keep enjoying your family.

My best wishes to everyone,
-- Anca /// I don't have a good quote yet. I'll work on it. ;-)

 

[Al]

Anca. May I suggest Woo Hoo no ALS as a quote.

AL.