Concerned about early ALS

Status
Not open for further replies.

Joshua1125

New member
Joined
Sep 2, 2022
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
City
Hull
Hi, 29 year old male here. First and foremost, thank you in advance for taking the time to read this. I have read the linked information and similar threads from concerned people - I would still like an opinion on my struggle so far with what I believe to be symptoms of ALS.

Something that has always stuck with me is the memory of my old rugby coach, a wonderful and brave man, that first noticed weakness in his hands before being diagnosed. As a result of this, I have always being concerned with the movement of my hands - unfortunately due to playing lots of sport I get a lot of aches and pains in my hands and my thumbs are a strange shape due to ligament damage.

I have done blood tests for inflammatory markers but levels were fine. I wake up with very stiff hands and stiff joints in my fingers - recently my index finger has started twitching uncontrollably from the bottom knuckle and it was extremely unnerving to see my whole finger wagging from side to side and I then got myself into a state of panic and my big toe then started doing the same thing within a day and then my whole body has been twitching - particularly in bed and after just waking up.

I arranged an appointment with my doctor who basically would not even look at my hands for arthritis due to my age and told me the twitching was my mind - but the twitching in my index finger began before I had any severe anxious thoughts. It may be worth noting that there is a pulsing taking place between my thumb and index finger. The doctor essentially took no notice of my ALS concern.

I have since found some comfort in reading similar threads and my anxiety has calmed down and much of the other twitching has (touch wood) calmed down but the index finger twitching and pulsing remains which is a real concern.

I have over the last few months had some muscular neck and shoulder pain but this had settled down.

Something that doesn’t seem fair is that twitching appears to be so common but Google leads many people down the ALS rabbit hole of worry - why is this? When this site and others deter against people worrying about twitching.

I have arranged to pay privately for an EMG and appointment with a neurologist next week.

I really appreciate any readers that have taken the time to read this post.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,976
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
If you carefully read the post you refer to it tells you that twitching without actual failure means nothing.
Your coach began with clinical weakness, not twitching.
I know it is hard once you start freaking out, but you are convincing yourself.
Let us know the outcome of the EMG, but don't ask for further reassurance until then as only a doctor examining you and doing tests can give you the results in context.
Until then, rather than focusing on reading more and worrying more, focus on mindfulness and health improvement.
 

Joshua1125

New member
Joined
Sep 2, 2022
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
City
Hull
Thank you for the reply and the kind words.
I do just have another query about the EMG test that I hope someone could help with.
Will the neurologist be able to distinguish between ASL, a trapped/pinched nerve, Carpal Tunnel Syndrome or others should any abnormalities occur?
Would those other conditions provide a dirty test?
And finally, I have only had the twitching for two weeks but the hand stiffness for much longer - I assume this is adequate time for the test to be reliable?
Thank you so much
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,880
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Yes

dirty is not a technical term but emgs can be abnormal in many ways. ALS has a number of specific things they look for in a widespread pattern. The electrophysiologist can interpret them.

if you have twitching due to ALS ( dying motor neurons) the emg would be able to find it
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,976
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Yes, different diseases and injuries show very different results on the EMG.
 

Joshua1125

New member
Joined
Sep 2, 2022
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
City
Hull
Thank you. EMG was described as 'pretty much pristine' I had the EMG in my left hand and arm and right foot and leg. My consultant previously worked at a MND centre and explained that he has seen over 1000 of patients and only three had twitching as a first symptom and even then the patients had missed signs of weakness so please if you are reading this for some clarity on your twitching then do pay attention to what is being said by the wonderful people on this forum when they say twitching is not an early symptom.

The cause of my twitching was likely a disruption to my ulnar nerve and the whole body twitching that came afterwards is almost certainly due to stress and anxiety - much of which has stopped now.

I do just have a final question for this forum - would other neurological diseases show up by doing an EMG on my arm and leg? I should have asked the consultant this immediately afterwards but I was too wrapped up with what was going on when trying to convince myself I should be relieved.

Thank you for reading and for being an unbelievably supportive online community.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,880
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Congratulations on your emg

thank you for repeating your neurologist’s words about people who are supposedly only twitching having unrecognized weakness that is our experience too. We had one person who said they only twitched yet they could not turn the key to open a door.

many diseases neurological and pther can be seen in an emg. others can be seen in the ncs that is usually done at the same time. However in the vast number of neurological diseases some are not. Epilepsy stroke and Alzheimer’s to name but three. However you likely don’t have s neuro disease. If I were you I would go back to my pcp and ask what next
 

BlsdMama

Active member
Joined
Dec 5, 2016
Messages
95
Reason
PALS
Diagnosis
05/2017
Country
US
State
IA
City
Cedar Rapids
Thrilled for the results of your EMG. Benign fasciculations are a real thing and the benign part is especially lovely. ;) I’m coming late in the Q&A, but I, as a super slow professor, has drop foot and tripping falls (pleural) before any twitching so I hope that’s further consolation!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,976
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Wonderful result - surely the doctor told you they use the EMG to assist diagnose hundreds of diseases/conditions/injuries?
You are brilliantly good to go.
 
Status
Not open for further replies.
Top