View Full Version : ALS Fear
Hi all !
I'm 22 and i'm from Argentina. (Not a native english speaker, sorry for mistakes)
I'm writing here since a two weeks ago exactly i started to have some symptoms like:
- Rigidity in my hands (It started in one finger in my right hand and then go to the other hand.
- Some mild twitchings in random parts of the body
- Joint pain sometimes
- Feeling weak (sometimes i feel this in the right part of the body)
Anyway, i tried to move some heavy things and i can, seems that i don't have any real weakness, only the sensation.
- Random tingle
- Sometimes i feel like if nothing is real, seems to be low pressure.
I need to clarify that i suffer anxiety, and a week ago (In the middle of these symptoms) i had a panic attack for first time, and i couldn't move my hands.
I became blood tests and they seems to be clean.
I went to my GP and she told me that seems to be anxiety, and nothing to worry about.
Anyway, she requested me a ultrasound hands, and resonance of entire column. (I have rectification column and pain in my back usually)
And indicated me low doses of clonazepam if necessary.
I found weird that she didn't asked me a EMG or brain resonance.
I want you to know that my grandma died about ALS a year ago, that's why i'm worried about.
And i'm really worried about these symptoms :(
Could this be all anxiety?
Thanks in advance to all of you. I found this forum very useful.
---------- Post added at 12:22 ---------- Previous post was at 12:08 ----------
In addition, the symptomps sometimes in some hours of the days goes, and then come back.
In exception for my right hand, sometimes my left hands seems to be OK.
I play guitar and that's why i realized that they were rigid.
Definitely sounds like anxiety symptoms to me, especially as they come and go.
Definitely sounds like anxiety symptoms to me, especially as they come and go.
Thank you for your prompt answer!!
Do you think that the symptomps could last for a 2 weeks ? Like the rigidity in my right hand?
Anxiety symptoms can happen for an indeterminate amount of time. They can come and go. My biggest symptom is neck pain due to the muscle tension anxiety brings, I've had it on or off for over a year.
Rigidity in you hand could also be a symptom of guitar playing. I play guitar too. It is always worth checking your technique to try and reduce tension.
Anxiety symptoms can happen for an indeterminate amount of time. They can come and go. My biggest symptom is neck pain due to the muscle tension anxiety brings, I've had it on or off for over a year.
Rigidity in you hand could also be a symptom of guitar playing. I play guitar too. It is always worth checking your technique to try and reduce tension.
Actually, when i take this low dose of clonazepam (15mg) the symptoms seems to go, completly in my left hand and my right hand feels quite less rigid.
I don't know what should i do since i don't want to take anxiolytics, really i don't like it.
And i'm afraid to be covering something else with these.
About the guitar, could be in my left hand (I am right), but with my right hand? I don't think so
Sparkling_Fairy
13-09-16, 18:58
ALS was my first fear, because my muscles started twitching for no reason. I had this symptom (along with a lot of others that followed) for a year! 2 weeks of anxiety symptoms is nothing, believe me.
Even now I still get it when I feel really nervous about something.
And I'm sorry to hear your grandmother died of this. It's an awful disease.
But it's only hereditery in 10% of cases, which is extremely low! And at your age, the chances of you having it are extremely low. So having had the fear myself I know how debilitating it can be, but it's just anxiety
ALS was my first fear, because my muscles started twitching for no reason. I had this symptom (along with a lot of others that followed) for a year! 2 weeks of anxiety symptoms is nothing, believe me.
Even now I still get it when I feel really nervous about something.
And I'm sorry to hear your grandmother died of this. It's an awful disease.
But it's only hereditery in 10% of cases, which is extremely low! And at your age, the chances of you having it are extremely low. So having had the fear myself I know how debilitating it can be, but it's just anxiety
Thanks for your support. I'm really afraid as you said.
It is so debilitating, and annoy me 24/7 since sometimes i think i will die!
So scary and sad :(
georgewing
14-09-16, 06:06
Well seems to me that its anxiety for sure and the fact that your grandma dies it maybe create a shock for you and it activated anxiety in you
Thanks for your support. I'm really afraid as you said.
It is so debilitating, and annoy me 24/7 since sometimes i think i will die!
So scary and sad :(
i sometimes worry about ALS along with my heart and brain but what you need to tell yousrelf is how rare the condition is for a young guy like you, hope teh anxiety passes quick
Thank you, really, thank you all !
The symptoms gone in exception for the rigidity in my hands, in my right hand specifically.
I have to take some exams the next weeks, and today i'll go to my GP with more blood tests.
I will keep you informed.
Thank you again, this is really very debilitating some days and i can't stop think about it and my future :weep:
Argentina -- I too have an intense ALS fear. I even joined an ALS forum to discuss my symptoms! And even AFTER two neurologist and one neurosurgeon assured me I do not have it, I still am scared. I have had MRIs, Blood tests, a spinal tap, a nerve conduction study ... and all of it points to spine issues. But even with a diagnosis, I am still afraid! My point is, you must overcome the fear. The fear is the worst. Here is a wonderful post I saved so that when my fear is so intense, I can relax:
Symptoms
The major initial symptoms of ALS are clinical weakness, atrophy and hyperreflexia. Some people may have slurred speech.
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
Atrophy
Atrophy, or muscle wasting, is a frequent early symptom of ALS, but it is best judged by your PCP (primary care physician) or neurologist. If you are trying to judge it yourself, the atrophy must show a measurable difference between left and right sides, or between today and past measurements taken in the same manner (and hopefully by the same person). But remember, no human body is perfectly symmetrical and small differences are normal. Dents, dimples and other indentations in a muscle surface are common and generally meaningless.
Hyperreflexia
Hyperreflexia, or overactive reflexes, cannot be judged by you. This determination must be made by your PCP or neurologist. Slightly overactive reflexes are not uncommon and, especially if they are bilateral, may be meaningless.
Speech and swallowing issues
Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign! Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue stop!
Twitching
If you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes If you have twitching without clinical weakness, atrophy or hyperreflexia, your twitching is probably not from ALS, which is a very, very rare disease.
"I asked her about contradictory information about fasics being a precursor of MND. Here is her answer 1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes. 2. Fasics themselves are no real indicator of MND or any other disease. 3. In most cases, fasics are of benign origin.4. I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice. 5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notices them."
Pain
If you have pain, aches, tingling, soreness, etc., these point away from ALS. ALS is a disease of the motor nerves, not the sensory nerves. There can be pain in ALS, but it is almost always well into the disease process, when the muscles can no longer hold the joints together or when immobility has caused frozen joints, bedsores, etc.
Other Issues
Anxiety
Anxiety can be a real problem that can endanger your physical health. It is a self-fueling fire—the more anxious you become, the more twitches you will have, the more you obsess with perceived weakness in your arm or leg or hand, the more dents you will find… and the more you will become convinced you have atrophy. If you can’t stop using the internet to diagnose your problems, or if you cannot stay away from this site, that should tell you something important about your mental health.
My neighbor died yesterday from ALS. He was diagnosed in June, 4 months ago.
This is an ugly disease, it doesn't hint around and tease, it's very quickly obvious.
I know 2 other people currently suffering with ALS, both are extreme and got that way very fast.
I really don't believe lingering fear of prolonged vague/odd symptomslead toward ALS, sure not in those I am watching suffer with it.
Hi all.
To begin with. I'm very grateful for your answers.
I went to my GP with my blood tests and i have:
Core Anti Factor Positive 1/320
So she requested me some more blood test to discard any autoimmune disease.
I'm a kinda sad because this will take at least two weeks and if you suffer anxiety like me, you know how exasperating it can be :(
How were your reflexes?
Actually, she didn't test them :huh:
That's insane. Is she an actual MD?
That's insane. Is she an actual MD?
She's one of the best of my city, and it is a big one.
She told me that Neuro-Degenerative diseases are discarded.
Anyway, most of my symptoms has gone. In exception for some random twitchings (I'm trying to think that they are normal)
And some rigidity in my hands, that come and goes in my left hand and still but milder in my right hand.
This could really be anxiety? It's so scary.
Sparkling_Fairy
16-09-16, 21:11
Yes, this could absolutely be anxiety.
Definitely the twitching.
And the rigidity is probably because you focus on it. When I have the impression my leg feels a little numb, it will feel more and more numb as the day goes on because I can't stop focusing on it. But does it actually ever go numb? No!
You can't stop focusing on it, I know that. But in time you will and you'll see that it goes away
She's one of the best of my city, and it is a big one.
She told me that Neuro-Degenerative diseases are discarded.
Anyway, most of my symptoms has gone. In exception for some random twitchings (I'm trying to think that they are normal)
And some rigidity in my hands, that come and goes in my left hand and still but milder in my right hand.
This could really be anxiety? It's so scary.
Discarded? What does that even mean? The way to test for neurological deficit is through a neurological exam, which must include reflex test. I'm not even a doctor and I know this lol.
Anyways, the chances of you having ALS are ridiculously low. Not even worth worrying about.
MyNameIsTerry
18-09-16, 03:33
My neighbor died yesterday from ALS. He was diagnosed in June, 4 months ago.
This is an ugly disease, it doesn't hint around and tease, it's very quickly obvious.
I know 2 other people currently suffering with ALS, both are extreme and got that way very fast.
I really don't believe lingering fear of prolonged vague/odd symptomslead toward ALS, sure not in those I am watching suffer with it.
Sorry to hear about your neighbour, Nancy. :hugs::flowers:
You sure are surrounded by people with serious conditions. It must be extremely hard regardless of fighting anxiety that loves to focus on such things. I'm betting you have a lot more inner strength than you even realise.
Discarded? What does that even mean? The way to test for neurological deficit is through a neurological exam, which must include reflex test. I'm not even a doctor and I know this lol.
Anyways, the chances of you having ALS are ridiculously low. Not even worth worrying about.
Yes i thought the same.
Anyway, i will consult with a neurologist the next week.
Regarding to my symptoms, they still persist, but only in my right hand.
The last sunday i feel my hand totally normal, and i realized that when i wake up, it is normal, till one hour later.
The random twitchings still present too.
Now i'm a bit more relaxed since i think that this could really be anxiety.
Hoping tests come clean and all this is over once and for all :weep:
Just to update.
All my blood tests came clean, even the ecography.
Most of my symptoms have gone, i still feel my right hand a kinda rigid, but i'm not sure if this sensation is real or not.
The results of my resonance will come by today, and i will update too.
I seem to be perfect, so now i'm more relaxed, and more sure that this is anxiety.
Hope this could be useful for the people that are going through something like this.
:yesyes:
Just to update.
All the tests came clean and my symptoms have gone for more than 2 weeks.
Today i had the biggest problem of the month and i get them back !!!!!
So i'm sure that this is anxiety. I cannot believe that my body could be affected by it, but seems to.
I think i need help with this.
Thanks to all who have commented this post. I really appreciate it.
thats good to hear , it is a very rare illness so its unlikely you would have it but i can understand your anxiety it can make you think you have anything.
i have done the same with everything.
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