wesker17
Member
- Joined
- Sep 6, 2014
- Messages
- 18
- Reason
- Learn about ALS
- Country
- US
- State
- OR
- City
- Eugene
Hello everyone, Some of you might remember me from a few weeks to a month ago. I had/have some progressive issues with twitching in my legs, weakness/pain in my hand and breathing difficulty.
This is just a heads up about the dangers of self diagnosis on the internet. No matter who you ask be it: members of this board, or DR. Google, you WILL ALWAYS find 10 additional reasons to worry. Don't believe me? Listen to my story:
2 months ago I developed a weakness in my hand and twitching in my legs. A simple google search for "twitching + weakness" gave me ALS as the top result. I began to read...and then I read more...and more...until my heart sank into my stomach and I became a basket case. Little did I know at the time that progression of symptoms is of PARAMOUNT importance when it comes to MND's: The Chicken and the egg debacle or in this case "fasciculations and atrophy". Which comes first?
Well, the well mannered and attentive members of this forum will tell you that weakness came first, then twitching, then atrophy. Or wait, this person says atrophy then twitching. "WHICH IS IT?" You scream to yourself. You might also ask other questions like "does body-wide fasciculations mean I don't have ALS?" You will likely hear "No that's not ALS at all, ALS starts in one area and stays there, paralyzes then moves up the limb" PHEW! ok...."I'm so glad I read that because I've been so upset these past weeks". BUT THEN the symptoms don't go away, you've calmed down, you've put ALS behind you BUT WHY AM I STILL TWITCHING?! AND THE WEAKNESS IN MY HAND IS DEFINITELY WORSE. "I better get a second opinion from Dr. Google". "OMG the patient in this neurologists' journal sounds just like me. OH and LOOK he said patient had onset of body wide fasciculations; in fact, most of his cases presented this way. OH NO!"
But it doesn't stop here. While I read more and more about the disease I begin to develop other symptoms. One of them took me to the ER 5 times (breathing difficulty). First I think I'm having a heart attack and the doctors took this very seriously. an EKG and a CT showed no embolism or blockage in my heart. BUT my liver is enlarged. GREAT! Back to Dr Google, now I'm reading about liver related illness that could cause what i'm experiencing. I've now stepped into the vast world of Autoimmune disorders, Cancer, and Neuropathys. One day I think I have cancer, the next I think I have MS. Every day that goes by I have a new maniacal crying fit alone in front of the computer saying "This is what I have, oh god I don't want to die!" OH NO! I can't breathe again! (back to the ER) This time my EKG was abnormal, they are observing me overnight and monitoring my breathing. My respiratory rate was 50% of normal function. The doctors couldn't find out what it was. I laid there for 36 hours in woe thinking it must be cancer due to my exhaustion and lack of appetite AND twitching/weakness. My body was tired, achy, I was beginning to groan out of exhaustion. My mouth was dry, "this is the end I thought". The doctors perform a battery of tests from thyroid function to stress test and CT. The doctors are baffled and send me home with a strong recommendation "see a neurologist immediately".
Now while I wait for my refferal, i'm getting worse. Always tired, emotional, my legs are still cramping and twitching, in fact now the twitching is everywhere and it's stronger and jerkier. I even had a couple laughing/crying episodes in private where I seemed to lose my mind. "I'm officially insane" I thought. But it doesn't take more than a few seconds to find out that crying/laughing episodes ARE ALSO SYMPTOMS OF ALS!. Now i'm comatose. I sit and watch whole muscle groups contracting on their own, painfully. I look in the mirror and see my arms, chest, and stomach twitch in harmony with each other. I can't breathe at night. I have to sit up otherwise I can't get a deep breath. I find myself having to shrug my shoulders and arch my back to get a full breath. I lay there in bed for days accepting my fate. I am emotionally and physically exhausted. I've lost my appetite. I'm ready for death. I mourn all of those that I leave behind. Goodbye cruel world.
The phone rings: "Your neurologist referral has been approved" I get up and start to walk around the house. "Hmm I don't feel as fatigued as before" "Let me try to walk around the block" "WOW I just walked around the whole block by myself without breaking a sweat". Then i realize, "Has this all been anxiety?" The twitching/cramping and weakness in my hand is still there but "I feel pretty good" "huh...and i'm breathing alright too".
Does this sound like you? If it did, would you admit it?
Well, I'm here to say that Anxiety is a powerful trickster. It feeds on worry and makes anything that you fixate on WORSE. It may not be the cause of your symptoms but no matter what symptoms you have it will exacerbate them. It's hard to believe it but anxiety has the power to: make you slurr your words, gasp for air, and put a lump in your throat. It can do anything it wants. If you suspect you have ALS and are in the same place as I was STOP and find a way to reduce your anxiety! Wether it be with medication or whatever. Your true symptoms lie beneath that anxiety, and you won't TRULY KNOW how real/severe they are until you CALM DOWN. Did you know fasciculations brought on by stress can take up to a few days to go away after you've calmed down?
This begs the question: "So did you get a clean bill of health and want to come on here and post about it?"
No. In fact I still have 8 days until I see a neuro. My symptoms are worse than they were 2 months ago. My previously weak hand is now more useless with some fine tasks and the twitching in my body is still there. BUT I've got my anxiety under control(with medication) and now my symptoms though STILL THERE, are MUCH less severe.
Yes i've read journals where patients matched my symptoms 100% who were diagnosed with MND/ALS. But they are not me and they are not you. Until you get an EMG (and other tests) NOONE can do anything for you other than speculate. And speculation is a dangerous thing.
Thank you for reading,
Mike
This is just a heads up about the dangers of self diagnosis on the internet. No matter who you ask be it: members of this board, or DR. Google, you WILL ALWAYS find 10 additional reasons to worry. Don't believe me? Listen to my story:
2 months ago I developed a weakness in my hand and twitching in my legs. A simple google search for "twitching + weakness" gave me ALS as the top result. I began to read...and then I read more...and more...until my heart sank into my stomach and I became a basket case. Little did I know at the time that progression of symptoms is of PARAMOUNT importance when it comes to MND's: The Chicken and the egg debacle or in this case "fasciculations and atrophy". Which comes first?
Well, the well mannered and attentive members of this forum will tell you that weakness came first, then twitching, then atrophy. Or wait, this person says atrophy then twitching. "WHICH IS IT?" You scream to yourself. You might also ask other questions like "does body-wide fasciculations mean I don't have ALS?" You will likely hear "No that's not ALS at all, ALS starts in one area and stays there, paralyzes then moves up the limb" PHEW! ok...."I'm so glad I read that because I've been so upset these past weeks". BUT THEN the symptoms don't go away, you've calmed down, you've put ALS behind you BUT WHY AM I STILL TWITCHING?! AND THE WEAKNESS IN MY HAND IS DEFINITELY WORSE. "I better get a second opinion from Dr. Google". "OMG the patient in this neurologists' journal sounds just like me. OH and LOOK he said patient had onset of body wide fasciculations; in fact, most of his cases presented this way. OH NO!"
But it doesn't stop here. While I read more and more about the disease I begin to develop other symptoms. One of them took me to the ER 5 times (breathing difficulty). First I think I'm having a heart attack and the doctors took this very seriously. an EKG and a CT showed no embolism or blockage in my heart. BUT my liver is enlarged. GREAT! Back to Dr Google, now I'm reading about liver related illness that could cause what i'm experiencing. I've now stepped into the vast world of Autoimmune disorders, Cancer, and Neuropathys. One day I think I have cancer, the next I think I have MS. Every day that goes by I have a new maniacal crying fit alone in front of the computer saying "This is what I have, oh god I don't want to die!" OH NO! I can't breathe again! (back to the ER) This time my EKG was abnormal, they are observing me overnight and monitoring my breathing. My respiratory rate was 50% of normal function. The doctors couldn't find out what it was. I laid there for 36 hours in woe thinking it must be cancer due to my exhaustion and lack of appetite AND twitching/weakness. My body was tired, achy, I was beginning to groan out of exhaustion. My mouth was dry, "this is the end I thought". The doctors perform a battery of tests from thyroid function to stress test and CT. The doctors are baffled and send me home with a strong recommendation "see a neurologist immediately".
Now while I wait for my refferal, i'm getting worse. Always tired, emotional, my legs are still cramping and twitching, in fact now the twitching is everywhere and it's stronger and jerkier. I even had a couple laughing/crying episodes in private where I seemed to lose my mind. "I'm officially insane" I thought. But it doesn't take more than a few seconds to find out that crying/laughing episodes ARE ALSO SYMPTOMS OF ALS!. Now i'm comatose. I sit and watch whole muscle groups contracting on their own, painfully. I look in the mirror and see my arms, chest, and stomach twitch in harmony with each other. I can't breathe at night. I have to sit up otherwise I can't get a deep breath. I find myself having to shrug my shoulders and arch my back to get a full breath. I lay there in bed for days accepting my fate. I am emotionally and physically exhausted. I've lost my appetite. I'm ready for death. I mourn all of those that I leave behind. Goodbye cruel world.
The phone rings: "Your neurologist referral has been approved" I get up and start to walk around the house. "Hmm I don't feel as fatigued as before" "Let me try to walk around the block" "WOW I just walked around the whole block by myself without breaking a sweat". Then i realize, "Has this all been anxiety?" The twitching/cramping and weakness in my hand is still there but "I feel pretty good" "huh...and i'm breathing alright too".
Does this sound like you? If it did, would you admit it?
Well, I'm here to say that Anxiety is a powerful trickster. It feeds on worry and makes anything that you fixate on WORSE. It may not be the cause of your symptoms but no matter what symptoms you have it will exacerbate them. It's hard to believe it but anxiety has the power to: make you slurr your words, gasp for air, and put a lump in your throat. It can do anything it wants. If you suspect you have ALS and are in the same place as I was STOP and find a way to reduce your anxiety! Wether it be with medication or whatever. Your true symptoms lie beneath that anxiety, and you won't TRULY KNOW how real/severe they are until you CALM DOWN. Did you know fasciculations brought on by stress can take up to a few days to go away after you've calmed down?
This begs the question: "So did you get a clean bill of health and want to come on here and post about it?"
No. In fact I still have 8 days until I see a neuro. My symptoms are worse than they were 2 months ago. My previously weak hand is now more useless with some fine tasks and the twitching in my body is still there. BUT I've got my anxiety under control(with medication) and now my symptoms though STILL THERE, are MUCH less severe.
Yes i've read journals where patients matched my symptoms 100% who were diagnosed with MND/ALS. But they are not me and they are not you. Until you get an EMG (and other tests) NOONE can do anything for you other than speculate. And speculation is a dangerous thing.
Thank you for reading,
Mike
