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nerdtastic

New member
Joined
Dec 1, 2012
Messages
1
Reason
Loved one DX
Diagnosis
04/2012
Country
US
State
Tennessee
City
Nashville
My mother was diagnosed with ALS. I do not believe she has ALS.

Evidence that she has ALS
  • Her speech is slurred.
  • She drools and has trouble swallowing.
  • She claims to laugh and cry uncontrollably, though this seems very subjective to me.
  • A neurologist has diagnosed her with ALS.
  • She has had several tests for other diseases including blood tests and imaging tests. These have all been negative.

My doubts
  • She is an alcoholic. She drinks all day. She smokes cigarettes all day. She smokes marijuana and becomes mentally debilitated. This makes conclusive observations and communication really difficult.
  • She told me, last spring after she was first diagnosed, that she thought the slurring speech was a result of binge drinking around the time she first experienced her symptoms.
  • She has no apparent trouble walking or moving.
  • No muscle twitches or atrophy.
  • There is no family history.
  • She refuses to get a second opinion citing the cost. (She is uninsured.)
  • She is emotionally distressed about other things. She has no desire for the doctor to be "wrong" about this.
  • She doesn't eat well, only things that are easy to swallow. She seems healthy but definitely does not get sufficient nutrition.

My plan is to convince her to get a second opinion. I don't know what else to do.

  • Are there other steps I can take?
  • Is this undoubtedly ALS?
  • Could it be a stroke? or some sort of brain damage brought on by years of substance abuse?
 

Alyoop

Very helpful member
Joined
Jul 5, 2010
Messages
1,782
Reason
DX UMND/PLS
Country
NZ
State
NZ
City
NZ
It's hard to answer your questions without knowing what drew the neurologist to the conclusion that your mum has ALS. You should find that out if you can. Difficult if your mother chooses not to tell you. Certainly a second opinion when diagnosed with a terminal illness, is always a good idea.
I am sure, if your mother has a competent, neurologist, he/ she would have taken into account the medical and substance abuse.
Years of substance abuse can of course cause severe neurological issues, but again the Neurologist would know, from the tests that your mother has hopefully had.
 

Tokahfang

Moderator emeritus
Joined
Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
City
Richmond
If your mom got imaging and blood tests plus multiple neurologist visits without insurance, she's already put at least two grand into the process. I can see why she wouldn't want a second opinion. That said, Alyoop is correct. Without your mom's cooperation, you are unlikely to find out how subtance damage was ruled out.

On the other hand, some of what you cited isn't unusual. MND patients blame their symptoms on outside things commonly, from invisible carpet ruffs to "messed up" keys. Most people with bulbar symptoms (slurring, problems swallowing) eat easy to swallow food and avoid hard foods. Bulbar symptoms are also quite internal, you might not see any twitching or atrophy until it progresses elsewhere if it's ALS.

Time will tell, at any rate.
 
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