Motor Neuron Disease-Cousin of Lou Gehrig's Disease

[Brenda-Renzuli]

    
      Re: Motor Neuron Disease-Cousin of Lou Gehrig's Disease
    


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Posted by CCF MD on August 19, 1997 at 09:36:49:

In Reply to: Motor Neuron Disease-Cousin of Lou Gehrig's Disease posted by Brenda Renzulli on August 19, 1997 at 00:46:19:

: My mother was just diagnosed as having a "Motor Neuron Disease, Primarily Bulbar, a cousin to Lou Gehrig's Disease."  We are confused with this diagnosis and are hoping you can help.  She started having slurred speech and difficulty swallowing back in November and it has progressively gototen worse.  She no longer can talk and can only eat when her food is blended and she drools quite a bit.  Her only other symptom is that she is having difficulty remembering things.  All other muscles are normal at this point.  She has been seen by several doctors, the latest being a neurologist at UVA Medical Center who gave this diagnosis last Monday after several follow-up visits.  She had a "normal" MRI back in December, and has had two EMG's which show all her muscles working properly except the tongue.  She has been told there is no treatment except for a medicine that costs $500 and has such terrible side effects that it isn't recommended until she gets worse.  The doctor then told her to come back in 4 months.  Needless to say, we are very frustrated.  First of all, does this sound accurate?  What does "cousin to Lou Gehrig's disease mean?  Is the prognosis the same?  Would you recommend another MRI or Cat Scan to make sure there is no brain tumor?  I would be interested in having yet another opinion, but my parents live in Virginia, don't have much money to travel to the Cleveland Clinic, and have an HMO for insurance.  Any advice you could give would be greatly appreciated.  Thank you.
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Certainly is a tough problem dealing with a parent who is having a serious medical
problem when you feel that you are not getting the answers that you need.
There are a number of support groups available and I will give you some numbers
which may help.
ALSA
21021 Venture BLVD, Suite 321
Woodland Hill, CA 91364
1 800 782-4747
The above number should be able to put you in contact with any local groups
or doctors in your area specializing in ALS.
Motor neuron disease is an umbrella term used to denote a group of disorders.
ALS itself can present in many different ways: some patients present with
what has been termed Progressive bulbar palsy, a condition that starts with
difficulties speaking, chewing and swallowing due to lower motor nerve cell (neuron)
deterioration. This disorder affects about 25% of people with ALS. The EMG
at initial diagnosis can be normal except for the tongue with may show some changes.
If she is having as much speach and swallowing problems as you mention she
should probably have a swallowing evaluation. This is a condition that alot
of neurologists do not see alot of and a visit to an ALS center may be very enlightening to
you and your family.
Only one medication is currently approved for use in this disorder and that
is Rilutek. As you mentioned it is very expensive and the results are modest
but it was studied in the bulbar form of ALS.
You need to work with a doctor who you are comfortable with and who understands
this disease. It sounds like everyone needs more information. We do have an
ALS center here but it may not be feasable for you to travel here.
I would contact the ALSA and look for answers locally.
Good luck.