Question Title: ALS - long term survival

Forum: Neurology Forum
Topic: Amyotrophic Lateral Sclerosis

Posted by CCF Neuro MD on June 16, 1997 at 16:01:47:

In Reply to: ALS - long term survival posted by Suzy on June 09, 1997 at 15:11:03:

: I have a friend who was diagnoses with ALS 17 years ago. She is remarkably able-bodied relative to the normal course of the disease -- she still walks, although she has lost her balance and fallen on occasion, and speaks well enough to teach and perform psychotherapy; she can hold utensils and feed herself. She only just stopped driving recently.

My question pertains to information I read elsewhere about ALS having the potential to "burn out," leaving the survivor with a lower order of MND. I read the post by dru and your reply regarding ALS and lower MND, and I know my friend still reports her diagnosis to be ALS; can you tell me anything about long-term survival of ALS -- is there anything known about how or why some few individuals (Stephen Hawking comes to mind also) who manage to survive for so long?

I am also interested in knowing about drug trials -- she is always looking to be a participant in clinical studies of new drugs. Are you aware of any, anywhere in the US? Are there drug treatments available abroad which are not available here?

Thank you for your attention to this post.
Suzy

When we hear of patients who have been diagnosed with ALS and then go on to have a long survival we must always consider if the correct diagnosis was made. However, there are clearly patients who meet all the current guidelines for the diagnosis of ALS and yet do not have the typical high 1 to 2 year mortality rate that we typically expect in this disease. What we now call ALS may represent a variety of different diseases or different expression of a common type of brain injury. This could explain why there are some individuals who survive for long periods of time. There are attempts being made to understand this aspect of the disease better but we currently have little understanding for why this occurs. There are a variety of drug trials related to ALS that are ongoing in the US. Whether or not your friend would qualify for these trails would depend on the entry criteria for these trials. You can contact the ALS association for further information at:

21021 Ventura Blvd. #321
Woodland Hills, CA 91364
Contact person: Michael Havlicek, Pres. & CEO
(818) 340-7500

Dr H. Mitsumoto at the Cleveland Clinic Foundation is the neurologist who specializes in ALS. If you are interested in getting an appointment to see him you can call
216-444-5559.

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