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Author Topic: Worried constantly about ALS - Help!  (Read 263 times)

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Offline MadyMa

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Worried constantly about ALS - Help!
« on: February 03, 2014, 10:58:25 AM »
I am having another really bad time worrying about having ALS.  I have been worried about this off and on since 2001!  My symptoms are a weak feeling in left hand with tingling & crampy, weak, tingling in left front of foot, constant muscle twitches everywhere.  My symptoms started around 2001, and I had 2 EMG's (one on left arm and then one on left leg at two separate times).  I had a brain MRI and 4 hours of neurological testing at the hospital.  All tests came back fine.  After that, all my symptoms went away.  To make a very long story short, about every 3 years or so the symptoms come back, I go to the doctor and then they go away.  This time all my symptoms are back again and I can't help but think that this time the feelings will stay and only get worse.  I went to a new doctor (my old dr. left the practice) and after my exam he said he didn't think I had ALS, but when I asked him if he thought I didn't have it for certain he said "never say never".  Well, this threw me over the edge and I can't stop thinking that I have it for sure.  I am a mess!  I just needed to tell my story because I feel so alone and hopeless.  I feel terrible today.
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Offline jujumyers

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Re: Worried constantly about ALS - Help!
« Reply #1 on: February 03, 2014, 10:30:42 PM »
Hey MadyMa,

I can relate to how you feel. I am not a doctor so please don't take anything I say as medical expertise, but there are a few things you said that stand out to me. First you said your symptoms began 13 years ago. According to most of the leading medical facilities such as the Mayo Clinic and the Cleveland Clinic, the average life expectency for someone with ALS  is between 3-5 years - but usually within a year to 18 months there is a drastic decrease in muscle function in some place on the body (i.e. right hand completely paralyzed). So the fact that you have had symptoms for 13 years with no clinical weakness makes i highly unlikely ALS is your issue. Compound that doubly due to your clean EMG and the fact that the symptoms cme and go. ALS does not come and go; it is definite once it has done damage.

Now something that I absolutely can reassure you on is about your doctor telling you that he "never says never." I have worked in the legal field for a long time, an your doctor is ABSOLUTELY NOT insinuating that you may have the disease - he is actually covering his own butt form a legal standpoint. If a doctor tells a patient that they absolutely do not have ALS, no way, no how, 100% sure - and on some off chance the patient does; the doctor becomes liable for a lawsuit. So basically a doctor HAS to tell you to "never say never." Just for the record, medical malpractice is about the hardest case for a plantiff to win in court and the patient probably wouldn't win, but that doesn't mean that a doctor wants to go around making himself liable.
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Offline MadyMa

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Re: Worried constantly about ALS - Help!
« Reply #2 on: February 04, 2014, 04:25:55 PM »
Thank you so much for the comforting post jujumyers!  It really helped calm me down.  I get to the point where I have myself convinced that it can't be anything other than ALS.  I wish my doctor would have said this to me years ago.  He tells me not to worry, but he never explains why I shouldn't worry.  I will read this post every time I feel my anxiety getting out of control.  I am so happy I found this website as it is a great comfort to me and just know that your post helped me so much! 
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