Question on ALS

Status
Not open for further replies.

Marvelfan

New member
Joined
Dec 30, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
IE
State
NA
City
Dublin
Hi All. I am a 30M from Ireland. Was just browsing through the forum and want to thank all the contributors and commenter for their effort and input.

My symptoms began circa 3 months ago and started with twitching in my left calf and over the course of 8 weeks has spread slowly to my thighs, glutes, shoulders, forearms, tounge and temples. Immeditaly preceeding the 3 months I was hospitalised after taking atvorstatin 10mg for 4 weeks. I developed myositis in my left arm and was put on corticosteroids for 2 weeks. A lot of my left shoulder and arm has muscle wasted due to the myositis. However I still have motor function. Ironically its that arm that doesn't have any twitching. In the hospital I underwent a brain ct(clear) shoulder mri(odema) blood tests(ck-mm 12000)and a muscle biopsy(awaiting results)

I don't really have too many questions but wondering if anyone has any input on below I would greatly appreciate. Many thanks again to everyone on here with their precious time.
Can PALS generally feel their fascics? IE is it in anyway discomforting when they pop?
Can PALS determine before a facic occurs, the location and exact time it pops IE is there a buildup nerve message sensation before it pops?
When you describe clinical weakness in the must read posts. Is clinical weakness the absolute inability to perform the task or is there any situation where clinical weakness but can still perform a task to some extent?
Is it normal for a neurophysiologist to only examine 3 muscles? I am from Ireland and just wondering if that is uncommon generally.
How reliable in ppls experiences are the clinical examination tests that a neurologist performs? IE reflexes,babinski,hofmann etc
With ALS does the atrophy happen soon after onset of symptoms or is it very far into disease course?
Does the disease cause direct atrophy or is it unused muscle that causes it.(saw conflicting info on that)
Has anyone had experiences taking a statin for a short time and developing ALS?
Do PALS experience a invisible worms sensation in the bottom of their feet?

Many regards
Donal
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,085
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Hi Donal, I am not going to answer any of your general ALS questions because obviously you have a [presumably from what you've said, statin-related] myopathy, not a motor neuron disease. It seems like you are getting appropriate treatment for what you do have. But yes, depending on context, three muscles may be enough to confirm a myopathy vs. another explanation, on EMG.

So the great news is, you don't belong here. As a side note, you are young for statins (not sure if other cholesterol reduction approaches were tried first), so I would get a second cardiology opinion before starting another one.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,172
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Hey Donal I'd print those questions out and take them to your next doctor visit. They can really explain the answers completely in the context of what is happening with you.
All the best.
 

Marvelfan

New member
Joined
Dec 30, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
IE
State
NA
City
Dublin
Thank you all for your responses.
The reason I ask if there is anyone who has had experience developing ALS from statin use here?is that rhe rheumatologist does not think my current symptoms fit with the myositis any longer so they are referring me for an EMG
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,632
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Will you find people who were taking statins and developed ALS? Absolutely. The prime group for sporadic ALS is men in their mid 50s. A lot of them take statins. Correlation is not causation but of course people with ALS do look for a reason. It is human nature. Let us know after you get your emg
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,172
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Please take these questions to your doctor, we can't help you try to prove causation. It is best to discuss your individual concerns with a doctor examining you.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,085
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I suspect the rheumie is sending you for an EMG to be thorough and better characterize your muscle disease, not for any real suspicion of ALS. Let us know what the results are, but there's nothing more to be said for now, so closing the thread.
 
Status
Not open for further replies.
Top