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.