Fact vs. Fear: HELP getting the record strait!

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Fact vs. Fear: HELP getting the record strait!

Postby Davey0720 on August 21st, 2014, 1:49 pm

Hi, I have been visiting this site since I went through my ALS fear last July. I started with calf twitching and once I googled twitching my fear caused my twitching to go haywire into full body twitching. A little more information on me is I have been diagnosed by a psychologist as GAD, health anxiety, and PTSD. I live my life fearing of dying from cancer and now for 13 months ALS. I will be the first person to say I am ignorant when it comes to the medical field and in my ignorance when I have symptoms I will google those symptoms and every symptom once googled will show a fatal disease first vs most likely the cause.

Right now I am revisiting my ALS fears and just recently had a fear of Leukemia since I had low WBC on all my CBC test for the last 18 months. It was determined I don't have leukemia and now my mind is falling back on ALS. It started out as a new twitch I had on my left index finger. Usually these didn't bother me until ALS started being brought up on TV through the "ice bucket challenges". Now I hear the dreaded letters ALS everywhere I turn. Then stories on two sport athletes my age that got ALS. Well I went against what I have been told by everyone here and my psychologist and I googled one of the athletes( I'm not going to say his name because someone else will do what I did and their fears will increase). Before I knew it my anxiety went up to levels I haven't seen since I had a panic attack last year.

Last year I visited two hospitals for panic attacks and informed a doctor of my fears of ALS. Both doctors laughed at me!! I'm sorry for someone with health anxiety laughing at me did not help. I've had my fears of death as a child and was laughed at by family members which caused me to not trust talking to people about my fears. I also do not like taking CNS Depressants i.e. mental health medications due to their addictive properties and I don't like how they make me feel. With me I have a large amount of muscle mass and exercise 6 days a week and fear that it would take me a lot longer to feel the weakness if I have ALS. Also I am 30 years old and my doctor insists I do not need to waste my money on a neurologist. Now I will get to my questions with ALS please someone answer with info from a neurologist stand point:

With ALS why is twitching given so much thought into with us?
When does twitching become relevant with ALS is it after weakness or around the same time weakness presents itself?
Do neurologist and doctors even give twitching any thought when diagnosing ALS?
What twitches are worrisome for doctors and neurologists?
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Re: Fact vs. Fear: HELP getting the record strait!

Postby misterjuanperalta on August 21st, 2014, 2:40 pm

To answer your questions:

Twitching or fasciculations is a feature of ALS. However, it is also a feature of other issues. When you search for answers online, ALS is always a talking point, heightening our anxiety. Our fear is mostly of the worst-case scenario: ALS, because it's precisely what we don't want to be diagnosed with. Twitching or fasciculations becomes relevant when clinical weakness is irrefutable and cannot be doubted. Doctors and neurologists concern themselves with twitching or fasciculations when other sinister symptoms accompany them. Unfortunately, time is the best indicator of how benign or malignant our twitching or fasciculations are. Hope this helps.
Last edited by misterjuanperalta on September 10th, 2014, 7:08 am, edited 1 time in total.
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Re: Fact vs. Fear: HELP getting the record strait!

Postby Davey0720 on August 21st, 2014, 3:00 pm

Thank you for the response. I have been getting a little better then I take a step back when I read a post on here that scares me. My mom works at a major hospital in the midwest and one of her friends that is rated as one of the top neurologist in the midwest told her, ALS is something I shouldn't worry about and that people my age rarely get it. He said he never seen a case at my age (29 YOA then). She told him I was twitching and he told her for me to stop worrying. Obviously his words did not help. Sometimes I feel like an death row inmate waiting for the Warden to call my name. Sorry for the analogy but this is the best way I can paint a picture on my thoughts in reference to my twitching and ALS.
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Re: Fact vs. Fear: HELP getting the record strait!

Postby leaflea on August 21st, 2014, 3:12 pm

Davey, may I ask you which hospital in the midwest? You can PM me. I ask because I also work at a large hospital in the midwest. Where are you?
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Fact vs. Fear: HELP getting the record strait!

Postby jebmd on August 25th, 2014, 5:33 pm

Hi there,
I hear you about the health anxiety, it makes us do crazy things. And I am a physician!! In the last year ALS has been on my mind since my twitching began in Sept 2013. I have had 2 EMGs that are normal and am 47 years old. AND I am going to ask my neurologist to do one more in Dec one year from my first one just to calm my fears. I have recently been diagnosed and treated for thyroid cancer found totally by accident-this obviously messed with my head. My husband does not believe me when I tell him there is something wrong and then belittles me-until the thyroid cancer that is, it was really a wake up call for him. His brother in law has rectal cancer, just discovered and his sister had breast cancer 2 years ago. Hopefully he learns something from all of this. My advice to you is firstly-stop using google, it is a trap for those of us will health anxiety, second-if it helps you to hear that you don't have ALS from a neurologist then get a referral but you have to believe him if he or she says it, thirdly-once you have confirmed that you DO NOT have ALS then carry on. Young people do get it but it is rare and athletes and soldiers have a higher incidence for unknown reasons. Then the issue of your anxiety remains and must be dealt with or you will lose too much of your life to fear and worrying as many of us have already-I estimate that I lost 6 months of my life to this fear. I have been in practice for 20 years and have seen thousands of patients none of whom had ALS. I do have one blood relative, one classmate from high school, one non-blood relative and a chemistry teacher from high school who all died of the disease. The classmate was diagnosed at 37 and died at 45 and he was the youngest. That of course is where my fear comes from. I cope by doing what I have to do each day to look after my patients, kids and myself -my husband will have to fend for himself, I'm very angry at him still. So speak with a therapist and do something constructive with every day that you have so you can feel proud that you have accomplished something and that you have not let this control your life.
Courage,
J
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Re: Fact vs. Fear: HELP getting the record strait!

Postby jebmd on August 25th, 2014, 5:33 pm

Hi there,
I hear you about the health anxiety, it makes us do crazy things. And I am a physician!! In the last year ALS has been on my mind since my twitching began in Sept 2013. I have had 2 EMGs that are normal and am 47 years old. AND I am going to ask my neurologist to do one more in Dec one year from my first one just to calm my fears. I have recently been diagnosed and treated for thyroid cancer found totally by accident-this obviously messed with my head. My husband does not believe me when I tell him there is something wrong and then belittles me-until the thyroid cancer that is, it was really a wake up call for him. His brother in law has rectal cancer, just discovered and his sister had breast cancer 2 years ago. Hopefully he learns something from all of this. My advice to you is firstly-stop using google, it is a trap for those of us will health anxiety, second-if it helps you to hear that you don't have ALS from a neurologist then get a referral but you have to believe him if he or she says it, thirdly-once you have confirmed that you DO NOT have ALS then carry on. Young people do get it but it is rare and athletes and soldiers have a higher incidence for unknown reasons. Then the issue of your anxiety remains and must be dealt with or you will lose too much of your life to fear and worrying as many of us have already-I estimate that I lost 6 months of my life to this fear. I have been in practice for 20 years and have seen thousands of patients none of whom had ALS. I do have one blood relative, one classmate from high school, one non-blood relative and a chemistry teacher from high school who all died of the disease. The classmate was diagnosed at 37 and died at 45 and he was the youngest. That of course is where my fear comes from. I cope by doing what I have to do each day to look after my patients, kids and myself -my husband will have to fend for himself, I'm very angry at him still. So speak with a therapist and do something constructive with every day that you have so you can feel proud that you have accomplished something and that you have not let this control your life.
Courage,
J
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Re: Fact vs. Fear: HELP getting the record strait!

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