Would I know after 18 months if I had AL*??? Please respond I beg you

[Mamaisanxious3 17]

I’ve posted here before—- sorry.

I’ve  been doing pretty good with my anxiety. 
Been  twitching for 18 months. Back pain for a year. Still living normal life ( do experience odd twinges and tingles) will also feel like sometimes my knees will slide forward when I walk on occasion( no one can notice this but me , I’ve never fallen, ect) 

 

also just had a Massage and the the therapist starts venting to me about her dad who just passed away from als……. I couldn’t believe it. Is this a sign?!?!

i logged in after a long break and saw someone say they have read about als patients presenting with back pain. I’m gutted and freaking out big time. Can someone please help and reassure me ? Please? I had a clean EMG 8 months ago

 

 

[SurferJoe 11]

Anxiety and worry are definite causes of back pain, and also very common causes of back pain. Muscle tension in general often comes with worry. I've been there myself. In fact, I had back pain this morning because I was worrying about something. 

[Ironman 198]

It could be anything - nerve, muscle, "tardive dyskinesia" - ALS is a bit of a stretch, especially after 18 months.

[Mamaisanxious3 17]

Should I be encouraged about the clean report from the neurologist? Should I put this fear away with no weakness? 
 

the words a bit of a stretch scare me badly 

[Mamaisanxious3 17]

I do have a compressed disc at l/4 l5 that I am seeing a chiro for. 
I just got scared because abuse of someone here saying there is a connection 

me knees don’t buckle it’s more of lose ligaments from years of  playing catching 

I can still work out rock climb play volley ball run, ect

please I just need some encouragement, I hate this 😖

[MARC 431]

As I have said in other posts on this forum, I know of 2 people who I knew very well who passed away from ALS. My friend's wife passed away at age 62 in December 2020 and my client's sister's husband at age 73, in December 2017.  Both of their initial symptoms were slurred speech. 

[Mamaisanxious3 17]

Thank you Marc. I’m 31 and healthy- just not mentally obviously. My mistake was reading something on this forum that was probably said without research and it sent me into a tailspin. I know logically that back pain is common and not related to the “thing” especially if I have zero weakness. My physical state hasn’t changed in 18months- just my mental anxiety. It so hard I wish I had never googled this. 

[BrightPhoenix 78]

Whatever you do, do not Google, it really makes things worse for people like us.

There's those rare cases that are on Google that make frontpage news, and that's why those cases hit frontpage news, because they get the clicks.

If you're worried, try call your neuro's office and have him/her call you and have a list of questions prepared, that way you take care of all your HA question issues and can check all of them off one by one.  That way you don't have the "oh no, I forgot to ask him/her something!" mindset.

[Ironman 198]

Actually, a list of questions from a doctor would be a perfect roadmap.  Googling would be like "OMG - I fit ONE of the criteria therefore I have this disease".  That's too easy to do. 

You could see a bump on the skin, freak out that it's cancer....and it's a pimple!

[Mamaisanxious3 17]

Do y’all think I can really trust the clean EMG? I’m worried that calling the neurologist will feel my fear more. I would be in bad shape after 18 months right? Y’all I’m ready to cry. This is killing me. I can’t even enjoy my family. I just want to cry guys 😢😢😢😢

[Mamaisanxious3 17]

I have a compressed lumbar disc also that I am seeing a chiro for. I wish I would have ever googled this damn disease. Biggest mistake of my life. Honestly guys. 

[Holls 1505]

1 hour ago, Mamaisanxious3 said:

Do y’all think I can really trust the clean EMG? I’m worried that calling the neurologist will feel my fear more. I would be in bad shape after 18 months right? Y’all I’m ready to cry. This is killing me. I can’t even enjoy my family. I just want to cry guys 😢😢😢😢

I think we spoke before about this fear. I was an als worrier, for years. 😞 You have zero symptoms of Als and yes the emg absolutely clears you. As well as the neurologist not scheduling many many follow up visits with you. This disease does not ebb and flow, it progresses and yes, 18 months is a long time. This is just an irrational fear..your anxiety is lying to you. Don't let it take one more day. It's the holidays, please enjoy it with your family. You DO NOT have als. Biggest hugs. You are healthy, go enjoy a long beautiful life. 

[Mamaisanxious3 17]

I just love you holls 😭 thank you. 

[Holls 1505]

4 minutes ago, Mamaisanxious3 said:

I just love you holls 😭 thank you. 

Love you too hun. I promise you are okay. I unfortunately have become an expert on als. I know with out one doubt you are healthy. 🥰🥰🥰

[BrightPhoenix 78]

I'd like to point to a sticky on No More Panic about this, as this condition is a very common fear among HA sufferers:

https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!

The Fishmanpa guy is a veteran there and he's a "tough love" sorta guy so he's kinda abrasive, but this post helped me get over my fear.

The way he words it is kinda tough for us HA types because he doesn't sugar coat it, but since you went to the Neuro, and he cleared you from his neuro exams (I go to a neuro as well to manage another neuro condition that is annoying but not life changing (not gonna write it here so as to not freak you out)) and he does all kinds of interesting things - makes you push/pull against him, etc.  If he did those tests + the clean EMG and he didn't say anything is odd, then you are definitely good to go.  Take care of yourself and enjoy the holidays!

[Mamaisanxious3 17]

13 hours ago, BrightPhoenix said:

I'd like to point to a sticky on No More Panic about this, as this condition is a very common fear among HA sufferers:

https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!

The Fishmanpa guy is a veteran there and he's a "tough love" sorta guy so he's kinda abrasive, but this post helped me get over my fear.

The way he words it is kinda tough for us HA types because he doesn't sugar coat it, but since you went to the Neuro, and he cleared you from his neuro exams (I go to a neuro as well to manage another neuro condition that is annoying but not life changing (not gonna write it here so as to not freak you out)) and he does all kinds of interesting things - makes you push/pull against him, etc.  If he did those tests + the clean EMG and he didn't say anything is odd, then you are definitely good to go.  Take care of yourself and enjoy the holidays!

Bright Phoenix  thank you. I will take a listen. Yes the neuron did a clinical exam, nerve conduction and EMG and even wrote in a message to me” NO EVIDENCE OF ALS” in all caps. Also my primary has told me three times. But, health anxiety sucks. Thank you for your time 💓💓💓💓💓 have a beautiful holiday.

[Holls 1505]

Just keep telling yourself, anxiety yes..als no. That's what helped me too. Hugs. 

[Ironman 198]

You kind of have to separate the reality from the fear.  ALS is not something that just suddenly appears.  It's not worth waiting for something that is not going to happen.  If you get frequent checkups, and are not told anything at all, then you definitely have nothing to worry about. 

 

It's a distraction from something we are afraid to face.  We do it because we become good at it. 

[MARC 431]

In the 2 cases of ALS I mentioned before, both people got  noticeably worse over time, which is not the case with you, so therefore you are good to go. 

[BrightPhoenix 78]

On 12/7/2021 at 11:16 AM, Ironman said:

You kind of have to separate the reality from the fear.  ALS is not something that just suddenly appears.  It's not worth waiting for something that is not going to happen.  If you get frequent checkups, and are not told anything at all, then you definitely have nothing to worry about. 

 

It's a distraction from something we are afraid to face.  We do it because we become good at it. 

Just a heads up, according to that post I linked from FIshmanpa, it is indeed something that suddenly stops working or suddenly works at like a fraction of its capacity.

One thing I've learned is a lot of my tremor/twitching/weakness issues come from overused muscles/tendons - when they're overused it causes other muscles and tendons connected to it to fatigue and the "wrong" muscles" end up having to compensate for it.  That's how some people end up feeling kinda "off" when they deal with muscle issues.  Something is worn out/worn down/inflamed and it's time to have a physical therapist or someone who is familiar with sports medicine to take a look at it.

[MARC 431]

The two people I knew of that had ALS in the last couple of years had sudden unexplained slurred speech. 

[BrightPhoenix 78]

On 12/10/2021 at 11:12 AM, MARC said:

The two people I knew of that had ALS in the last couple of years had sudden unexplained slurred speech. 

Yeah, so that kinda matches up with what I'm saying.

I just hope we find a cure for it in the future or at least make it manageable like MS is.

You seem to have a lot of experience with folks who dealt with all kinds of health issues, MARC, including yourself huh?

[MARC 431]

Sorry to say, yes. I could tell stories for quite some time. 

[MARC 431]

I won't go into any details, but I have known people who had MS, Parkinsons, ALS, brain tumor, Non-Hodgkins Lymphoma, Hodgkins Lymphoma, Melanoma, Leukemia, Lung cancer, carcinoid tumor, pancreatic, bile duct cancer, liver cancer, stomach cancer, esophageal cancer, kidney cancer, bone cancer, blood clots, heart attack, stroke, TIA,  colorectal cancer, sarcoma, and DVT. I could write a book.  

[BrightPhoenix 78]

Yeah, I didn't think you had to mention them all lol.  Least you sort of have a knowledge pool to pull from.