Please help - concerned about ALS symptoms

Lineker1981

New member
Forum Supporter
Joined
Jul 6, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
GA
City
Atlanta
Looking for some help from the community on this please! I am in serious fear and have developed terrible anxiety about a potential ALS diagnosis.

I am a 40 year old male who started developing muscle twitching in both arms around 4 weeks ago, followed by strong muscle twitching in my upper abdomen, now twitching in both feet and calves. I have what feel like "very heavy legs" and am often out of breath when going up a flight of stairs despite being in quite good physical shape. Can anyone comment on how this sounds in terms of symptoms? I have read online that symptoms always start in one limb and then move to others rather than multiple areas. Is it possible to have twitching in multiple areas?

If I flex a muscle (for example flex my bicep) muscle twitching immediately follows for 5-10 seconds. I can't find anything online if this sounds like how someone with ALS fasciculations. Does anyone know if ALS fasciculations occur after flexion like this?

I visited a neurologist several weeks ago and he barely examined me and said that they are probably benign and no further tests needed but my twitching has become worse weekly.

Thank you for your help!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,490
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Hi, I'm really sorry you are so anxious about this despite being reassured by a neurologist.

Please read this really carefully, we put in a huge effort to create it for you.

You have no reason to suspect ALS, but you can go back to your doctor and discuss your concerns and get to the bottom of whatever is going on and get it treated. All the best.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,288
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
If there is anything going on, the fatigue suggests that it's systemic. I would return to your primary care doc and ask to be worked up, including a CBC and CMP. But none of this makes us think about ALS, and widespread twitching as stated argues against it as well.

Best,
Laurie
 

Lineker1981

New member
Forum Supporter
Joined
Jul 6, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
GA
City
Atlanta
Thank you for taking the time to respond to me. Unfortunately, I am still overwhelmed with fear...

I visited my primary care doc and received full blood work and everything in normal range. She was concerned about my muscle twitching problem.

For context, when I visited the Neurologist, it seemed like he was too busy to deal with me. He listened to me for a few moments as I anxiously described my symptoms and concerns and seemed to pay little attention to what I was saying as he checked my flexion in arms/knees and decided that it was benign facilitations. He offered me some pills to get rid of me (Duloxetine) and asked me to come come back to see him again in 4 weeks...

Since my last post, I have developed a feeling that could be described as, difficulty when trying to swallow. It feels like I have to swallow my saliva every 10 seconds or so and it's difficult to do so. It's not pain, more like discomfort/difficulty, and I only feel it on the left side of my throat when swallowing.

The muscle twitching is occurring in various areas of my body but primarily concentrated in my calf muscles with 90% in the right leg. 3 days ago I developed extreme stiffness in my right tibialis anterior (muscle on front of calf) and dorsiflexion (lifting foot upwards) has become difficult and I am concerned about a part mentioned in the Sticky that, "something stops working all of a sudden"...like a wifi signal, all of a sudden it's gone." I have not lost the mobility of it, but it seems to be weakening and be extremely stiff.

When you lose a muscle to ALS, is it literally like an on/off, or is it gradual over days/weeks that you lose it?

Any further feedback that you could provide would be really appreciated as I am struggling to get through my days with.

Thank you so much for your time.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,490
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm so sorry you are overwhelmed with fear.
Please immediately go back and discuss this with your doctor.

Also read this post through several times, very slowly.

You are not experiencing ALS symptoms, and you even show examples of how your symptoms don't match the sticky post. That is a really good clue on what you need to discuss immediately with your doctor so you can get help.
Please remember it is not appropriate to ask terminally ill people, and their carers to soothe your fears and hold your hand.
 

Lineker1981

New member
Forum Supporter
Joined
Jul 6, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
GA
City
Atlanta
Thank you for your reply. I appreciate it and very much empathize with all of those here who have been diagnosed as well as their loved ones / carers, as well as those who have already lost loved ones to this terrible disease. Certainly not my intention to upset anyone so I sincerely apologize for this.

I think that the big challenge for me is the vast spread of information online regarding how symptoms develop makes things confusing. It seems that a large amount of literature describes initial symptoms of muscle spasticity, whereas the sticky describes loss of use of a muscle like an on/off switch but doesn't seem to mention spasticity.

Could you share your thoughts on what role spasticity plays in initial ALS symptoms?

Thank you for your time on this.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,700
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Who says you have spasticity? In spite of the clumsy descriptions on various sites it is not merely stiffness and can only be verified by a doctor. It is clear you did not have it when the neuro said it was bfs. If you have new symptoms go back to be reevaluated. Spasticity if it exists can have a number of causes and is not specific to ALS. Your complaints ranging from head to toe argue against ALS. Let us know what the doctor says
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,490
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I understand the challenge you are describing.
That is why it is always best to refrain from spending hours searching and reading online as you are not a doctor and will end up confused and trying to connect things that are not related. You need to discuss your specific situation carefully with your doctor and ask them questions like - this is something I am experiencing, can you tell me what that is.
 

Lineker1981

New member
Forum Supporter
Joined
Jul 6, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
GA
City
Atlanta
I had my EMG this afternoon and the doctor said that it looks normal and does not think that ALS is currently present. It was a big relief.
The doctor reiterated what the moderators have already stated here, "we look for weakness as a primary sign of ALS."
Next step for me is an MRI on Monday to see if there is any issue in the brain causing my symptoms.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,700
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am very happy for you and thank you for reporting back. Best of luck
 

Lineker1981

New member
Forum Supporter
Joined
Jul 6, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
GA
City
Atlanta
Hello again, I was just reading an article and it mentioned that certain medications should not be taken prior to an EMG as they may effect the results.
This was not mentioned to me prior to mine so I took a .50mg Xanax an hour prior to my EMG.
While I understand that you are not doctors, any feedback on this from your knowledge would be very much appreciated.
Thank you for your time.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,700
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I can see no possible way that xanax would mask dead motor neurons. Really, if it could restore motor neuron function we would all take it and be cured. Although I do not take xanax no one ever told me not to take any meds before any of my many emgs for research studies so question the validity of your article. My emgs were done by experts in ALS emgs
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,288
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
It is actually sometimes used before an EMG to calm patients who are needle-phobic. So, no, it does not matter.
 

Lineker1981

New member
Forum Supporter
Joined
Jul 6, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
GA
City
Atlanta
Forgive me for taking more of your time but I am just so confused as to what is going on with my body...

l have hoarseness and strained voice when speaking. Swallowing is becoming more challenging. It is not failure, but feels like weakened swallowing that I have to put extra effort into to make happen. I have to clear my throat before speaking each time and often.

Overall I realize that the clean EMG should give me confidence but the developing bulbar symptoms really concern me.

Would you suggest that I have a barium swallow exam done or any other test?

Thank you for your time.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,700
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I can not tell you how many people come here worried about a limb symptom, have a normal emg and then develop what they think are bulbar symptoms.

go to your primary doctor. See what they recommend and follow their advice. Please do not post again unless as seems highly unlikely a neuromuscular doctor diagnoses you with MND

your doctor should be evaluating you and directing your care
 
Top