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samh95

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At 18 years old, with no previous family history, I realise that the likelihood of me having ALS is extremely low. Yet over the past 4 weeks, the progression of symptoms that I am experiencing is undeniable and frankly terrifying. It all started with a general fatigue that began on the 28th of July. I had a strange sensation in both my hands and my legs, a definite weakness, and cramping feeling in my thighs. The muscle twitching started at this time also. It is constant, 24/7, mainly in my calves but migrates to arms, hands, feet, stomach thighs and face also. I hand a real weakness in my little finger on my right hand, with noticable atrophy around my thumb on this hand also.
Over the last few days, I have started to limp and I fear this is because of foot drop. This limp is not in my head, as my GP has commented on the weakness in my toes. I believe that i have atrophy in my left thigh, and spasticity which is putting pressure on the back of my knee causing pain.
Very few sensory symptoms so to say, although i have noticed a numbness in the foot that I have been limping with.

I suppose that the progressioon of the symptoms, paired with genuine clinical weakness is what terrifies me. has anybody else experienced these symptoms? Please let me know, the anxiety is driving me insane.
 
Also forgot to mention thhat I have very brisk reflexes in both knees but have no clonus or babinski sign yet.
 
It's alarming how many young people are now worrying over this disease. ALS awareness has started this new "epidemic"! Aside from the unlikelihood that someone your age would have ALS, your symptoms do not sound like ALS, they sound anxiety driven. There is no "feeling" weak in ALS, muscles just stop working. There is no numbness. Twitching is common in everyone, and especially in people who worry about this disease. That has been proven. See your doctor about your anxiety and then stay away from sites like this.
 
Thats the thing, I didnt worry about the feeling of weakness until my doctor commented on the actual weakness in my toes, which he thibks is causing the limp.
 
I'm no doctor but weak toes could be anything. 18 year olds don't get ALS.
 
Sam--just let the doctor do his job and come to his own conclusions. if you go in there saying ALS he will think you are crazy. Your symptoms could be a thousand things and the chances of having ALS are not just extremely low--they are almost non existent!
 
I'm kinda stuck at waking up on the 28th of July feeling weak and 5 weeks later is sure it's ALS. Really?
 
update, not good

Yesterday was my weekly check up from primary doctor, which she has been doing since all my symptoms started, and it didn't go to plan. Within a week, she has noticed significant atrophy in my left thigh and leg. She was very surprised by how quick this had progressed. she also commented on the visible nature if the fasciculations in my calfs and thighs, as well as increased atrophy in my right thumb. I don't know what to do anymore. She has referred me to a neurologist but that could take months. she didn't exactly ensile confidence in me when she said that ALS wasn't off the cards, regardless of my age.

I am terrified at this point. I really do sympathise with everyone here suffering from this cruel disease, and do not mean to be insensitive. I'm so young and if this is what is awaiting me down the line, i honestly don't know how I will cope. Any advice or similar experiences are welcome! again, I apologise if I appear insensitive or unrealistic, I am just terrified.....
 
so are we all
 
I certainly can understand your terror.
If your gp is saying these things she should be advocating for you to see the neurologist very soon. I know things are different in Ireland but if she is seeing rapid deterioration as you report then she would be picking up the phone and calling the neurologist to get you in soon. If she does not think it important enough you need to ask why not.
Do you have any abnormalities on exam beyond weakness and atrophy of the leg? Does she see your reported atrophy in hand? Find weakness there? Reflexes? There are many other things it could be at this point that are more likely than ALS
So try to take it one day at a time right now it sounds like you need to see the neurologist and have tests done
 
There are hundreds of diseases to rule out, first.
 
Yes she notes the mild thenar atrophy, has seen my fasciculations, and has comments on my brisk reflexes yet still no progress towards a neurologist.... I know there are hundreds of other diseases but not many have this combination of symptoms, I don't know if any others do
 
I don't know if any others do

Again, Sam, you're absolutely right: you don't know.

Trust the person who was first in her high school, top of her college, selected out of medical school, completed a 3 year residency, and has worked as a doctor for quite a while.

I was married to a doctor for 20 years. Here's something I learned about them: She won't tell a patient what's on her mind; it would take years just to teach us how to speak the language. She'll only tell you a few tidbits to reassure you that she's working on the matter. She's still got a lot of work and research to do, and then she'll send you to the right place for the right tests. It's too soon to leap to a conclusion.
 
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