View Full Version : I have true ALS symptoms
Background- I’m 17 (f), I do have health anxiety. Going through a tough couple of months. All started with a fear of lymphoma due to an enlarged lymphnode. Freaked out for a couple days until it went down. During that freak out I had an extreme bout of nausea, head pressure, and heavy legs.Had extreme head pressure, on August 10th, experienced extreme head pressure and went to the ER. ER checked me over, went home with leg feeling strange. Not weak, just off. Afterwards, I of course consulted Dr.Google: Brain tumor. I was so scared and upset, my mother of course got me an appointment with my GP. Ordered an MRI 2 days later, after getting the MRI (all clear) I was very relieved. My head pressure went away, but my leg continued to feel off. I was assuming that it would just go away. Unfortunately that was not the case.
August 13th, started school, went to my weight training class. Did all my weights just fine, but that night I started twitching, in both legs and some in arms. My legs also felt very hot and stiff. Leg continued to feel off, and body continued to twitch. It’s the worst at night. It’s hard to sleep sometimes, and my legs feel very tight. This has since been on and off, some nights they just twitch, sometimes they’re tight and twitching. A few days later twitching in my arm started, as did burning of my left shoulder, that made the dexterity of my left hand not work right. And the arm felt weak. This however did just go away today after a couple days, but it seems whenever that muscle starts to burn the hand becomes weaker. I’ve been to my GP about this, whim checked my reflexes & CK levels, all normal. Sent me to a neurologist, whom gave me a clinical exam and noted that it was normal, no cause for concern, diagnosed me with myokymia, and have me anti-anxiety meds. The anxiety meds help my mental state but I still have these twitches all the time and the perceived weakness at times. I’m sure you know my biggest fear..I don’t even like typing the letters..
Has this ever happened to anyone else?):
One of the main causes of myokymia is stress and anxiety. You're posting on an anxiety website and you have HA :shrug:
Concerning your fear of those 'letters', read THIS (https://www.nomorepanic.co.uk/showthread.php?t=196071) as often as you have to.
Positive thoughts
I’ve read that so many times.. that was when I only had a weird feeling in my leg and twitching. Since then has spread to my arm and neck); I just wish there was someone with my symptoms and then turned out to be nothing. But I can’t find them ))):
I just wish there was someone with my symptoms and then turned out to be nothing. But I can’t find them ))):
Do a search for 'twitching'. There are literally thousands of posts. Not one has turned out sinister. Not one.
Positive thoughts
I’d be very happy if my only symptom was twitching, however, I have weakness in my left side, mostly my left arm and leg and neck. My mother is requesting a spinal MRI and an EMG. So until then, I have to wait. I’m just terrified that it’ll be ***. The weakness hasn’t gotten to the point of me not being able to do something, but it’s there, and that’s what has me terrified
I’d be very happy if my only symptom was twitching, however, I have weakness in my left side, mostly my left arm and leg and neck. My mother is requesting a spinal MRI and an EMG. So until then, I have to wait. I’m just terrified that it’ll be ***. The weakness hasn’t gotten to the point of me not being able to do something, but it’s there, and that’s what has me terrified
Clinical Weakness—ALS is about failing, not feeling.
ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.
It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work.
Positive thoughts and facts
Thank you, I just have to keep calm until my spine mri and EMG test. Hoping for the all clear, it’s so unlikely that at 17 I could get this, MS is more likely even with my clean brain mri. And I wouldn’t be too upset with MS
---------- Post added at 14:16 ---------- Previous post was at 12:14 ----------
Was doing my makeup and was really struggling with my left arm & side of neck. I didn’t fail anything but they are just very fatigued. Very very concerned that it’s als
Kingdawson
16-09-18, 22:20
Thank you, I just have to keep calm until my spine mri and EMG test. Hoping for the all clear, it’s so unlikely that at 17 I could get this, MS is more likely even with my clean brain mri. And I wouldn’t be too upset with MS
---------- Post added at 14:16 ---------- Previous post was at 12:14 ----------
Was doing my makeup and was really struggling with my left arm & side of neck. I didn’t fail anything but they are just very fatigued. Very very concerned that it’s als
You don't have MS. It's extremely unlikely with a clear brain MRI and the symptoms you have stated would show up as Brain lesions. You are fine.
But there’s something going on..I really don’t want it to be ALS. But I’m so afraid..it probably is. The diagnosis takes so long and is so frustrating
When i have anxiety, my leg weaken, its like jelly
I’m going through the toughest 3 months of my life. It all started August 10th with my left foot feeling off, I brushed it off and thought it’d go away. A few days later, my legs started to twitch. A few times an hour they’d twitch, then it spread to everywhere. There are hotspots however, my left shoulder and my legs, and the feeling in my leg has spread to my left arm, both legs, left side of neck, and the left side of my back. Things just feel heavier. Then a while after I started having excess saliva and cannot sing as well as I used to.
I went to a neurologist and he explained that I’m too young to have als (I’m 17 F) and that he didn’t find clinical signs, which is true since I don’t have clinical weakness and apparently no hyperflexia which is a good sign. He prescribed Lorazapam which I’ve been taking everyday otherwise I’d be in a state of constant crying. This was at the beginning of September. Note: I have No family history of this disease, only one case of MS in the family
Now I feel weaker, I cannot stand up for 30 mins without needing to sit down. My mother pushed for an EMG/NCS. I had these done last Friday, the office told us I’d have the results this Monday (that did not happen), and still hasn’t happened. I had my EMG done by a MND specialist, and he legally couldn’t disclose any information. They said they’d have it to my neuro that same day, but that he wouldn’t call us until Monday. So everyday I’m being told to wait one more day, but it just hasn’t come yet, and I’m slowly getting worse. I got sick the day of my EMG and now feel my breathing is weakened, my ears have not been unplugged for a few days, and it’s even harder to get around. I live with just my mother and my dogs. My mother has lost so much in her life already, and if she lost me I’m not sure what’s shed do.
Anyway..I’m losing hope. How could this happen to a 17 year old, I have so much to live for, my boyfriend & I have been together for almost 4 years and always talk about our future together. I can no longer talk about our future without breaking down into tears. I’ve wanted to be a doctor since I was small, now it’s ironic...I’ve lost a lot already in my life and this is just the worst thing that could possibly happen to me and my family. Everyday it gets a little bit harder to live my life.
nomorepanic
04-10-18, 13:54
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
I don’t wanna die young ); it’s just not fair
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