Back muscle atrophy and scared

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,378
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Earlier this year, I went through one of the most painful weeks of my life by reaching over an extra inch to open a drawer. It doesn't take much, especially if your muscles are already tight or irritated.

I would try an NSAID (if you do not have GI issues) and heat for your back, even if you don't think they'll help, and walk as much as you can, because breaking the spasm cycle can have surprising efficacy. But certainly be in touch with your doc.
 

Jselliott07

Member
Joined
Nov 26, 2019
Messages
23
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Omaha
I am going to request another appointment and emg. I have read and researched that a lot of people had twitching and weakness as their symptoms and that their first couple emg’s were normal and then subsequent emg showed als. I know without a doubt something is going on, I pray and pray with all I am it’s not als but I just don’t know. I’m having a hard time getting doctor appointments though which is only slowing the process down. It’s takes months and months to be seen, it’s crazy. I really really appreciate all the feedback, probably more than you know. I’m 33 and have 4 young kids and want to be healthy and strong for them and just feel like I’m not, and it’s not getting any better. Have you heard of the emg being done too early or not showing anything and then last one showing the disease?
 

Jselliott07

Member
Joined
Nov 26, 2019
Messages
23
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Omaha
I won’t be able to have another emg for 3-4 months at the earliest. I have the shoulder weakness and all over twitching and what I feel is disappeared muscles. The thing I don’t get is the emg that they said was ok. I never saw the report so maybe something was there but how can I have all these increasing symptoms that point to something horrible but a “clean” emg? Think it was done wrong? This is horrible. My shoulder constantly feels so tired and shaky and almost hot (like when your muscles are burning during an intense workout)
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,850
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
The most likely answer is whatever is wrong with you does not show on an emg. there are many diseases and emgs do not detect everything - they do detect ALS however. You have every right to the emg report. If it isn’t on the patient portal just request it from medical records.
It doesn’t sound like ALS to us. You had a normal emg. There is nothing more that we can say. Either see the neurologist again and ask , with an open mind, what is wrong? Or seek a second opinion and ask them the same thing. Focusing on a single disease will make it harder to get to the real problem whatever that may be
 

Jselliott07

Member
Joined
Nov 26, 2019
Messages
23
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Omaha
He has been very unresponsive on my patient portal but I can ask again. Thank you. Can the emg be false or done too soon? I’m scared this subsequent one will wield different results and I don’t know if I can handle that. The worst of it all right now is the burning shoulder/weak shoulder. Ugh
 

Jselliott07

Member
Joined
Nov 26, 2019
Messages
23
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Omaha
I’m sorry. I’m just very scared and I guess I’m looking for some hope. I have no other knowledgeable person that I know to ask besides this page. Sorry.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,850
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
if it isn’t showing under test results on the portal look to see if there is a way to request results from the system ( not messaging him). I can in my system. If no look on the website wherever he practices for medical records. Before everything got posted on the portal I could print out a request for medical records, fax it and get whatever sent to me.

ALS is very obvious on an emg. any one who is trained is not going to say it is fine when it is ALS. If you had lower motor signs at the time of the emg ( atrophy in ALS is lmn. Atrophy does have other non lmn causes) yes it should have showed and would not be too early. Lower motor neurons die in ALS before atrophy. A lot of internet stories are incomplete or misleading or downright lies. The real people who had normal emgs and ended up with ALS later are generally upper motor neuron onset. They have distinctive findings on clinical exam and not the symptoms you report
 

Jselliott07

Member
Joined
Nov 26, 2019
Messages
23
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Omaha
They had a cancellation so I have the emg scheduled in a week and a half. I’m super nervous. With my previous one I didn’t have this left arm/hand weakness so I’m scared they’ll have different results.
I also have shaky muscles. Is that a bad sign? Along with the nonstop constant twitching, whenever I use my muscles I have the shakiness like you could have when lifting something very heavy, except it’s on everyday use. Does that mean my muscles are getting weaker and equal weakness associated with als?
 

Jselliott07

Member
Joined
Nov 26, 2019
Messages
23
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Omaha
Even my handwriting isn’t a smooth easy writing anymore.
 

Jselliott07

Member
Joined
Nov 26, 2019
Messages
23
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Omaha
I also feel like I’m having increasing issues with my mouth. Breathing and then now talking sounds like I have a lisp and like my tongue isn’t moving fast enough and too big. It’s like the small symptoms I’ve had are now increased and getting to a concerning point. I can’t even enjoy the days because I am just so sad and scared and annoyed that I’m having all these issues. I pray it’s not what I fear but I can’t help but have that doubt. I don’t know where you go from here.
 

Jselliott07

Member
Joined
Nov 26, 2019
Messages
23
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Omaha
If emg’s can be clear with bulbar onset, how do they go about diagnosing bulbar? My previous neuro’s didn’t look at my mouth or face at all
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,850
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
There are emg sites that assess bulbar. There are also clinical findings. however you are reporting symptoms in your back and your arm so why are you even asking this? You have an appointment coming up very shortly write down your questions for the doctor and let us know after you get results
 

Jselliott07

Member
Joined
Nov 26, 2019
Messages
23
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Omaha
I was asking bulbar because I’ve also been having issues with speaking and swallowing. My appointment can’t come soon enough but I have so much anxiety going into it, I’m trying to stay calm but I just can’t.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,880
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Jselliott, you have posted 17 times rambling onto a 2nd page.

It almost has an appearance of being more so taunting.
Many have been tolerant... so far.

"My appointment can’t come soon enough but I have so much
anxiety going into it, I’m trying to stay calm but I just can’t,"

This not a hold your hand until you get another EMG Forum.

This is not an Anxiety Forum. (For other "Could this be ALS'ers" too.)

You have posted your numerous symptoms, no need to post
another.

The only post you need to post next is the EMG report with
summary/conclusion at the bottom. And we'll have to trust
it is yours.

I've been following you and you have searched numerous
threads and posts of others almost to obsession... maybe
looking for something to further convince yourself you have
ALS.

Until then....
 

Jselliott07

Member
Joined
Nov 26, 2019
Messages
23
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Omaha
I am not trying to be taunting in the slightest, I very much appreciate and am grateful for the wisdom others have given me. And my searching and researching has been trying to gain as much knowledge as I can from others that have come before me. This is all very scary and new to me and to me, this was the best place to learn. Sorry if my rambling offended you, that was not my intent and I hope others didn’t think so.
 
Top