Ask Our Expert

My Grand Mother and Mother passed away with ALS. What should I be doing to live a healthy life while waiting for some type of break throug or cure?

This is an important issue. If you are the offspring of a family with documented familial ALS as is the case here it is worth considering genetic counceling. Only one commonly tested gene for ALS - the SOD1 gene has been identified so it depends on whether your mother and grandmother had this particular gene which may now be impossible to determine. Most 85% of familial ALS is due to unidentified genes at the moment. You may not want to go this route. Living a sensible (common sense) lifestyle is always good.
Dr. Eisen

I am upset, confused, and trying not to be scared. My husband was told by a neurologist after three hours of testing that there was strong evidence of ALS. Because there is no definitive test/diagnosis, rather a process of elimination, how can we move forward? Is it or isn't it ALS? He is scheduled for an MRI which I am told will not show ALS, but eliminate other possibilities. Would a neurologist tell a patient he has ALS without strong evidence? Help. I need some assurance. Should we get a sceond opinion? He has been to see two doctors, a nero-sugeon, and the neurologist. His primary sympthom is back pain not due to injury, no reflex in left leg, extreme weakness in left leg, cannot left it,which also causes him to fall. Mt husband is 51 and was always a strong, hardworking man. The neurologist said he is not as strong as he should be, and is showing leftside weakness.PLease advise. Thank you in advance. Worried and confused.

If you let me have a contact number I will try to get in touch with you.

Andrew Eisen
eisen@interchange.ubc.ca
Dr. Eisen

Are there any specific exercises that those who suffer from ALS should perform? If so, is there an ideal frequency or intensity? Thanks!

No, although it depends on specific issues. For example a frozen shoulder needs specific exercises. However, in general it is good to be as active as possible without becoming exhausted - don't push it!
Dr. Eisen

My grandmather has been reporting to her family doctor for approx. one year that her right hand is twitching and getting weak. In the last 4 months, she can hardly open it unless forced. The rest of her arm, including sholder has also become weak. Also many complaints about her knee joints and hips.
This week, her legs just stop supporting her. She can still move them in bed, but is now hospitalized because they can't seem to figure out why she can't walk.
I am wondering if it is possible she has ALS? Should we mention this to the doctors? How do we go about asking for testing to rule it out? Are there ALS specialist in our region?

The description could certainly fits with ALS and it is very reasonable to suggest this possibility to your doctor.
Dr. Eisen

My husband has had ALS for 6 years. beginning in the Bulbar region. He cant speak and has a feeding tube but can still walk etc. His main problem is expelling mucous which is making it difficult to breathe. When he uses an auto bi-pap it causes what he discribes as spasms in his chest which shut off his breathing for 20-30 seconds folowed by 15 sec. of breathing. The situation can last for 5 hrs. Help! Pam Kline

If you are writing from BC please contact Marife Fabros at the ALS Centre. If you are from outside BC you will need to contact your local respiratory care team and ALS Clinic
Dr. Eisen

Can Thyroid Cancer mimic symptoms of ALS? My dad has ALS (5yrs confirmed diagnosis). He is 59 yrs of age. He is walking and functioning on his own. His respirologist recently estimated another 4- 6 yrs before he will need assistance with breathing. Recently, he has been diagnosed with Thyroid cancer. I believe the lump has been in his neck since diagnosis of ALS. Do you have any info on this issue?

There is no direct link between cancer and ALS. Quite a number of people with ALS have a thyroid problem. In any event the cancer and/or thyroid problem should be treated independently of the ALS.
Dr. Eisen

Have you heard of the use of Azilect in ALS?

This medication is for Parkinson's disease. It is not recommended for ALS.
Dr. Eisen

could you look into this posting and ck how true/false the claims made by this person. i hope the BC centre is above his statements.

http://www.alsforums.com/forum/showthread.php?t=1189

This is a very old story with trials done many years ago. It was not successful. The doses of "vitamin store"glutothione are totally homeopathic and of no value. Large doses not available are dangerous.
Dr. Eisen

Is ALS also called Lou Gherig's Disease? I wonder because Libertarian Party Presidential (U.S.) candidate Harry Browne tragically died a few months ago of Lou Gherig's, at the age of I think 73. I started when one of his legs became useless. They could not find out what was wrong, but finally found out. Is it always terminal? And what are very early symptoms. I wonder why they could not diagnose Harry until he was already wheelchair bound.

Yes ALS has frequently been referred to as Lou Gherig's disease after the famous Yankee player died from it. It usually starts with painless weakness of muscles anywhere in the body, including speech difficulty. It progresses at variable rates and can take a while to diagnose. This is mainly because most family doctors and generalists may see only one or two cases in their lifetime and community neurologists may not see more than a few cases each year so they are not necessarily familar with the condition.
Dr. Eisen

Dr. Eisen

Many thanks. May I pose one further question. Are there any treatments / approaches currently being investigated (in Canada or the US)that you would consider particulary promising?

Carolyn

If you look up the web site below it will take you to all the current trials that are open or completed.
http://www.wfnals.org/trials/index.html
There is presently nothing too exciting. However, things are on the horizon. A whole group of "neuroprotective" studies in animals is proceeding and when complete some will open the door to human trials. There is also a significant amount going on it terms of symptomatic treatment in particular breathing and drooloing.
Dr. Eisen

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