Dominick

Als fears back

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I’ve been dealing with health anxiety on and off for at least 20 years so i do know I have a propensity to obsess, over analyze when it comes to symptoms.  I dealt specifically with als fears that started about three years ago when I noticed muscle fasciculations all over my body combined with perceived weakness in my arms.  I was able to overcome the fear after a trip to a neuro who did basic strength and reflex tests and said I was fine.  I’m three years into fascics and though they have slowed they are still there all over including ones that seems to occur right after movement of limbs.  My pincher grasp in both hands now feels weak.  I feel pain and muscle burn from over use when I’m doing fairly basic things like shaving, carving with a knife or even clipping nails.  I can still do these things but my hands appear to tire and need rest before I can resume.  I’m also having Terrible back pain that I think is either occurring because of rigid tight hamstrings or is causing them because I have hamstring tightness all the time. I recently have consipation like stools all the time though I’m going daily.  I can’t walk even a mile without debilitating back pain and pain in ankles and shins.  I have to rest before I can proceed. I’m back to panicking about als in such an extreme way.  It’s preventing me from living again and I don’t know what to do.

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For walking, you need good shoes with enough cushioning.  You may not be wearing the right shoes or may need inserts for cushioning.

If you are worried about your hands, try doing daily exercises with your hands.  Building endurance might help curb some of the fears.

If the neurospecialist said you are fine, then you would need to remember that something isn't just going to happen all of a sudden and you get it.  Stuff like ALS is progressive and not instantaneous.

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Try to remember ALS is an extremely rare disease with only 5,000 new cases each year. Cancer and heart disease total over a million, so there is really no comparison. I remember once asking my doctor about a carcinoid tumor and he said I have a better chance of getting struck by lightning. 

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Im really having trouble this go around.  My jaw tires when I eat certain things, l like a salad or nuts where I get muscle burning like you feel with overuse in the jaw. I already described that I get the same thing with my hands when doing things like carving, shaving etc.  It certainly feels like muscle weakness to me though with rest and restart I can still perform the tasks.  Body wide pulsing and fasics combined with these other symptoms just seem like too much not to be ALS.

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There's more to ALS than that, though.  You're able to walk, you aren't drooling, you can swallow, you can raise your feet, etc.

Muscle weakness can be anything, including being tired!

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I’m really losing it.  Having suicidal thoughts and completely haunted by this in every way.  I don’t know what to do or how to stop it

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My hamstrings felt tight all week and I’m calling that spasticity. I now feel the pulsing in the hamstrings and thighs like crazy all day.  It’s making me insane and I really don’t know how to pull myself out.  I also am a 9/11 survivor who has already been diagnosed with kidney cancer which thankfully was caught early and removed but now I’m reading that 9/11 may increase likelihood for neuro conditions including als 

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Just now, Dominick said:

My hamstrings felt tight all week and I’m calling that spasticity. I now feel the pulsing in the hamstrings and thighs like crazy all day.  It’s making me insane and I really don’t know how to pull myself out.  I also am a 9/11 survivor who has already been diagnosed with kidney cancer which thankfully was caught early and removed but now I’m reading that 9/11 may increase likelihood for neuro conditions including als 

Kidney cancer would not have done all that.  Did you strain your muscles or something?  That's how I end up hurting.  At that point, I would take and analgesic or Ibuprofen.

 

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I have know a number of people who had ALS and their symptoms were not like yours. 

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The likelihood of you having ALS is minimal. Anyone can turn the minor symptom into doom. A headache may be an aneurysm, a bruise could be leukemia, an eye flash could be a detached retina and the what ifs go forever into infinity with no answer. 

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