Continuing decline in muscle strength, abnormal reflexes, and atrophy. Looking worse by the day

Status
Not open for further replies.

Alsat19

New member
Joined
Feb 8, 2020
Messages
1
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
ME
City
Portland
I'm 20 years old, and have had these issues since around Febuary of 2020. I went to my GP for a routine physical, and they found reflexes that were "worrying". Upon a more thorough examination, 3+ hyperreflexia in both legs, a positive hoffman's sign in my left hand, and something called a "partial" babinski sign, which I guess means no response on my foot, but other abnormal reflexes in my quad and calf that point to some sort of dysfunction there.

I had an appointment scheduled with a specialist, but then COVID hit and I was told that I could either wait for the appointment's rain check in 3 months, or go to the hospital "if an emergency arose". I ended up waiting, and by the time I made it into the neurologist, she found that I now had abnormal reflexes everywhere, and VERY obvious muscle atrophy in my left thigh (measured, it was almost 3 inches less in circumference). Hoffman's sign had spread to my right hand, and I had clonus in my right ankle.

Weakness was mild to nonexistent except in my "extensor digitorum", which I gather is the muscle that opens up the hand. I have no difficulty closing my hand (I still have a grip strength of 150 lbs), but I can't get my fingers open very well, especially in my left hand. My left thigh, which is the most atrophied (again, not up for discussion whether or not this is "in my head" or not, multiple doctors have confirmed that there is atrophy there, it's visibally deformed compared to my right leg), is weaker, but only by a hair.

I have a clean MRI on both my brain and neck, and an EMG which I'm told was "inconclusive" but which I don't have the results for. I'm concerned about the reliability of the EMG for 2 reasons: 1, I have twitching, but it's very intermittent and nonlocalized. I didn't have any twitches during the EMG, and 2, the doctor never tested the two most troublesome muscles, my hand and my thigh. I'm also not particularily impressed with the neurologist I saw; they have a 1.2 star rating and were the subject of a malpractice suit about a decade ago.

At this point, I've somewhat come to terms that I likely have ALS, or something of a similar nature, considering the objective physical changes and progression I've experienced. I'm wondering if maybe there's some rare mimic disease, or something that either my doctor, or I, have overlooked? It's a real bummer to have to deal with this at the age of 20, after just escaping from an abusive home and finally overcoming severe PTSD and depression.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,463
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
If you got the emg report and posted it ( with your name removed) we could comment better. You are entitled to the report and if there is a patient portal it is probably available online

there are many many neurologic diseases and at your age something else is much more likely.

if you don’t trust the neuro get another opinion.

re emg it matters not at all whether you were twitching at the time it was done
the changes in ALS are widespread so if it would show in many muscles not just your most symptomatic
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,104
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Rarely would we expect an "inconclusive" EMG in re ALS with the issues you describe. And, as you know, ALS is rare at 20. So that's a lot of rarities, as Nikki noted.

And yes, there are certainly mimics, so many that is is silly to list them. You can find long lists. So this is where seeing your EMG and any abnormal labs would shed more light.

Almost every neurologist has dealt with malpractice at some point, and ratings on line aren't all that. Still, as Nikki says, you can always get a second opinion.

Best,
Laurie
 
Status
Not open for further replies.
Top