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.
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.