Has anyone been scared of ALS?

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Mary41
Regular Member


Date Joined May 2010
Total Posts : 74
   Posted 5/17/2010 12:53 PM (GMT -7)   
Just wondering?

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 5/17/2010 1:06 PM (GMT -7)   
Yes, Mary, I sure have because my dad died from it (or something akin to it) a year and a half ago. That is one scary prospect. What are your symptoms? I used to go to alsforums.com, which is a forum very similar to this one. It gave me a lot of support through a tough time. I recommend it very highly.
  Achey 
 
    Diagnosed: Fibromyalgia, possible Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
Be yourself.  Everyone else is already taken.


Mary41
Regular Member


Date Joined May 2010
Total Posts : 74
   Posted 5/17/2010 1:23 PM (GMT -7)   
I have muscle twitching all over .

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 5/17/2010 1:59 PM (GMT -7)   
Well, it's hard to say. I know there are other things that can cause twitching too. Good luck getting to the bottom of it.
  Achey 
 
    Diagnosed: Fibromyalgia, possible Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
Be yourself.  Everyone else is already taken.


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 5/17/2010 3:02 PM (GMT -7)   
Mary, I know your rheumy put you on Lyrica at your appointment last week. Does she
think you have fibro? Muscle twitching is caused by many things including stress and anxiety.
Other things that can trigger it is being overtired, too much caffeine. You also could be lacking
something in your diet and your electrolytes could be off. I attribute mine to Fibro and
being tired

Hugs, Robin


Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


Sheila1366
Regular Member


Date Joined Aug 2005
Total Posts : 384
   Posted 5/17/2010 3:54 PM (GMT -7)   
I twitch when I am really tired.
I struggle with FM,Raynauds Syndrome,gastroparesis, IBS and depression. I trust in God with all things. Been a tough journey and it's not getting any easier but thanks to God and my family I am not alone.


Holly berry
Regular Member


Date Joined Aug 2013
Total Posts : 29
   Posted 8/17/2013 4:17 AM (GMT -7)   
[i think I have got ALS even though I have seen 2 neurologists and my GP several times. When I look in the Internet my symptoms seem to match. I am so scared. Anyone else in this situation

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 8/17/2013 7:34 AM (GMT -7)   
Mary41

I twitch all over, its my biggest symptom...100s of time a day, this went on for months...I thought about ALS in the beginning, not only is it really rare, its more common in men. Also the twitching part is late stage ALS...when your limb has gone completely weak, usually starting in the foot.
If you go on the ALS website and research it you will get better information about it, twitching can be caused by many things, anxiety, sleep deprivation, some medications, vitamin deficiency allsorts, a lot of fibromites also have twitching and so do CFS patients. In fact, people at my work suffer from twitching and they dont have any of these...twitching is common, ALS is not.
If after researching it better and you still think you have this, talk to your doctor...sometimes when we worry about these health problems, the symptoms can become very real..this has happened to me
]I hope this helps a bit put your mind at rest :o)
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 8/17/2013 8:19 AM (GMT 0)   
Mary, I have not been scared of ALS because I trust my doctor and trust his diagnosis.  He was right since I've had fibro for decades and haven't developed anything remotely similar to ALS.  Holly, I do understand why Debbie would be concerned since her father had ALS, but if you are worried because you read it on the Internet, try to trust your doctors.  You have had several learned opinions.
 
Mary, your Lyrica could be causing this.  Some side effects of this drug are "trembling and other problems with muscle control or coordination" and "muscle twitching or jerking".  Here is the list of side effects.
 
 
Holly, you are letting fear run your life.  If you've seen two neurologists and your GP several times and they say you don't have ALS...then believe them.  Stop reading on the Internet.  If I read on the Internet all the symptoms I have, I'd think I had one foot in the grave!  You can't live your life like that.
 
Here are a couple of good quotes that might help both of you and other members, too.  The Roman philosopher Seneca sayd, "We are more often frightened than hurt, and we suffer more from imagination than from reality."  How true that is!  Another person, Eckhart Tolle, wrote in his book "The Power of Now: A Guide to Spititual Enlightenment":  "The psychological condition of fear is divorced from any concrete and true immediate danger.  It comes in many forms:  unease, worry, anxiety, nervousness, tension, dread, phobia, and so on.  This kind of psychological fear is always of something that might happen, not of something that is happening now."
 
Both these quotes I got from the Save Our Bones program that I'm on for osteoporosis but they sure hit home for this forum, too.  We can't live in fear.  We would be miserable all of the time.
 
Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Myself 09
Veteran Member


Date Joined Dec 2009
Total Posts : 5876
   Posted 8/17/2013 8:29 AM (GMT -7)   
Listen to doctors. We pay them for their expert opinion. Internet information is only so good as the person who posted it, and isn't specific to you.

Honestly, despite my use of this site, the 'internet' fears are a real problem for many people.
Fibromyalgia DX 2005. Ulcerative Colitis 2003, Crohn's 2013, enteropathic arthritis and Ankylosing Spondylitis, 2013. History of Fibro--2 out of 3 siblings diagnosed. Started SCD-June 2013. *There are three kinds of people in the world: ones who see the glass as half-full, ones who see the glass as half-empty, and others who see a big crack in the side which is leaking all over their %$#@# foot

Holly berry
Regular Member


Date Joined Aug 2013
Total Posts : 29
   Posted 8/17/2013 9:33 AM (GMT -7)   
I am now having CBT to help with my fears. Thanks for the advice, you are all lovely people

AnnaBananna
Veteran Member


Date Joined Jun 2013
Total Posts : 789
   Posted 8/17/2013 3:45 PM (GMT -7)   
My old pain doctor told me that twitching is also a symptom of pain meds. Basically you have these messages that are carried from the brain to the painful spot and back. Once you interrupt the message the brain can send out a 'Marco Polo' signal, if you will, trying to get the signal relayed again.

I also get them at night right before I go to sleep. Sometimes they are so bad that I shake the bed/my whole body convulses. I attribute those big ones to overtiredness, and the little ones to pain meds. For now.
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