Status
Not open for further replies.

jonur

New member
Joined
Mar 7, 2019
Messages
6
Reason
Learn about ALS
Country
US
State
New Jersey
City
Wayne
Hi everyone.

I know this isn't an anxiety or fear forum. But I have some concerns that I am really worried about and confused about due to Google. First off, I'm so sorry for anyone going through this disease- I don't want anyone to be wasting their time reading this because I'm not worth it with what I'm about to say since I don't have official news about anything yet. But I feel that I need to vent since I don't have too many people to talk about it with, and if someone wants to respond, please do..but not if it takes up too much of your time or energy.

A few months ago, I started feeling very tired in my arm muscles (both arms). It freaked me out a bit, but I got over it, and it went away for a while. Two weeks ago, I woke up with a stiff shoulder/neck, and I haven't been able to shake off the stiffness, it's never been this bad before. I've tried different pillows etc., and nothing works, but it's gotten better. I couldn't move my head to look right and now I can and it's fine but the pain is slightly there.

Today I started loosing my voice/became strained/raspy, but I do have a stuffy nose so it could be a cold, but then I'm like maybe that's too coincidental, and I also started feeling a burning feeling on my right left-on my thigh-like a burning sensation every 20 minutes or so.

I brought it up with my GP and she told me it was probably a pulled muscle, but my grandma died of ALS, so I am scared of it, and it's put me in a very anxious state of mind, because Google shows so many symptoms that I feel like I have. Sometimes when I am brushing my hair in the morning, my arms get tired so I have to stop and then do it again... are these things the onset symptoms? I don't want to talk about it with my mom because it brings up the sadness with her mom (she's the grandma who had ALS). Even though my GP said not to worry, I made an appointment with a neurologist for Monday.

I've also noticed my fingers feel stiffer, especially when it's cold, so I just don't know... I don't know what to think what else it could be or if these are symptoms that sound like it could be ALS.

Thank you in advance for any responses...
 
Last edited:

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,010
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
So sorry about your gran, that's really tough. You have my sympathies.

Have a read here: https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html

Burning muscles, feeling tired, pain, stiffness- all these appear to come and go or have improved. You seem to report symptoms that travel to various parts of your body and have only been around for a few weeks or accompany a stuffy nose. None of this indicates ALS in any way- per the Read Before Posting thread.

Good you are seeing your doctor, but going straight to a neurologist is a jump. It sounds like you anxiety about ALS due to your gran is causing you to catastrophize- it may be a good idea to talk to a grief counselor or therapist to work through that experience.
 

jonur

New member
Joined
Mar 7, 2019
Messages
6
Reason
Learn about ALS
Country
US
State
New Jersey
City
Wayne
Shiftkicker, thank you so much for your response and for making me feel better. Please don't respond again, as I don't want you wasting your time on someone like me. I already feel guilty for posting here. But thank you again for your words-and thank you for that sticky, I read the whole thing. I do feel like my shoulder improved, but the pain is still there when I stretch it a certain way, so that's what freaks me out a bit... but rationally, I'm trying to tell myself that if I have weakness in my arms when I'm doing my hair, it would get worse or not come and go or I wouldn't be able to do certain things etc.

The reason I jumped so quick to Neuro is because my GP didn't feel like it was a rush (which I can appreciate)- and yes, you are correct about therapy-I'm seeing a therapist once a week, so hopefully that helps - unless it truly is ALS, then I don't know. Sorry for the rant..
 

jonur

New member
Joined
Mar 7, 2019
Messages
6
Reason
Learn about ALS
Country
US
State
New Jersey
City
Wayne
By the time I posted this message earlier a few hours ago, I've lost my voice even more. Now I'm more scared than ever. I wish it was Monday so I could get to the Neuro. The Neuro is in NY and I am in NJ, as this was the only appointment I could find on such short notice instead of waiting 6 weeks for other local ones

I'm trying really hard not to google or waste anyone's precious time. ugh.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,010
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
There is nothing the people here can do for you. If your anxiety about ALS is this overwhelming, you need to sign off instead of feeding it by researching online.

Please don't think the people here don't care, but this forum is not set up for anxiety support- this small subforum is here just to answer a few questions for people before they move on to a health anxiety forum or they visit with their doctors.

Please take care of yourself.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
976
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
Ok, here goes. Do you remember the note home saying someone in your child's class has HEAD LICE. The first thing your mom does is scratch her head. Everybody gets their head checked, no HEAD LICE. Still you scratch. Nobody on your whole block has HEAD LICE, scratch, scratch, scratch. You are probably scratching now just reading about HEAD LICE. This is what you are doing with ALS. You had some weird sensations, went straight to Dr Google and got yourself spooked. You have none of the classic symptoms of ALS, and I'm guessing no HEAD LICE either. Get help with anxiety.
Vincent
 

jonur

New member
Joined
Mar 7, 2019
Messages
6
Reason
Learn about ALS
Country
US
State
New Jersey
City
Wayne
Thank you both for your responses, and you are all correct.

I need to get a handle on this and think of this rationally.

I will be going to the neurologist on Monday, and then Tuesday I have a therapy session for my anxiety, and will ask for medication since I haven't taken medication for this because I thought I had it under control. I clearly don't.

I'm sorry for wasting anyone's time. Thank you all for responding. I'm sorry.
 

jonur

New member
Joined
Mar 7, 2019
Messages
6
Reason
Learn about ALS
Country
US
State
New Jersey
City
Wayne
Hi everyone.

Thank you for your responses. I didn't want to be one of those people who post once and then leave so I wanted to leave an update about my neuro appointment today.

So when I went in she tested my strength, made me walk in a straight line, checked my reflexes, and took out a small needle type thing and poked all around my body.

I told her about my symptoms - I told her how I am scared of ALS because of family history - and she said "even though you told me you feel like you have muscle weakness, I didn't feel that with the exam"

And then she checked my tongue and said everything looked fine. I know that ALS can't be diagnosed with just a physical examination so I don't feel like I'm 100% of the woods yet. But good news I guess so far.

She told me to come back in a month to do a test called an EMG she said to check for nerve damage and gave some blood work. I asked her if I should be worried about ALS and she said "you don't have any signs right now that point to ALS."

I felt uncomfortable asking her why she wants to do an EMG then... because I thought EMGs were used to look for ALS so if she didn't think I had any of the signs, why would she want to do an EMG? My friends are telling me to put this behind me and move on with my life and not even get the test done. but I guess I'll see in a month how I feel.

Anyway just wanted to update - especially for people who come here with similar symptoms etc., just so they can read the update.

Wishing everyone a wonderful soon-to-be Spring day!
 

jonur

New member
Joined
Mar 7, 2019
Messages
6
Reason
Learn about ALS
Country
US
State
New Jersey
City
Wayne
Hi, everyone! I hope all is doing well.

After learning about my recent anxiety and scare and finding out my grandpa died of ALS, I wanted to do more research on this. What is confusing me though is the whole muscle weakness.

I understand that muscle weakness, true weakness, is when you can't literally do something that you used to be able to do.

What confuses me is that I can't find information on whether or not there's something that leads UP to the weakness - like is there any signs that start to happen and then it turns to weakness (inability to do something)

i.e., getting more tired while using a certain arm, soar muscles, having to take a break to rest while doing your hair etc., are those the signs of leading up to muscle weakness or does it just STOP without feeling ANYTHING leading up to it?

Right now I'm getting tingling all over my body - feet and arms - but after reading stickie, I know it points aware from ALS (I hope), but with family history and stuff, I just wanted to educate myself even more.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,666
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
It sounds like the neurologist who examined you was very thorough and didn’t find any weakness on exam.

There would be no reason to suspect ALS with a normal neuro exam.

The neurologist is probably ordering the EMG to give you peace of mind. The flip side is that now you’re freaked out.

Look at the title of your thread “Can’t control my fear”. That says it all. This isn’t about having ALS. With a normal neuro exam, you don’t have ALS. This is about your anxiety.

I’m not going to answer your questions about weakness because that would only fuel your anxiety even more.

Since you have an EMG planned, I would urge you to refrain from further posting until AFTER the EMG. Otherwise you’re basically asking a forum of terminally ill people and their caregivers to babysit your anxiety, and that’s not fair to us.
 
Status
Not open for further replies.
Top