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rick/Wpg

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Hi all!
Has anyone heard of this? Seems the University of Alberta in Edmonton is doing a study on it....from a bit of 'googling' it seems memantine is a drug used for Alzheimers....apparently it is a glutamate blocker....anybody know more?

This is what they posted about the study...

Memantine Study Now Recruiting

We are now recruiting patients for a clinical trial of memantine in ALS. The study involves 11 monthly visits over a 10 month period. Participation will involve muscular, respiratory, and cognitive testing. Magnetic Resonance Imaging (MRI) will be done at 3 of the visits. Each patient will receive one of two doses of memantine.

Participants must be age 18-80 with symptoms less than 3 years duration and Forced Vital Capacity (FVC) greater than 70%. Eligibility will be assessed at an initial screening visit.

Tks!
Rick & Joan
 

jskierz

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UofA Research Trial

I talked to my neurologist about it last week and he was going to look into it. He was recommending Lithium and Rilutek though. I am still making up my mind if I am going to try them together or just one or the other. Have a full team appointment next week so if I get more information I will post it.:)
 

Gubnait

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Memantine is also in trial at the University of Lisbon in Portugal. i contacted them this week for more info, they told me that the trial is over and they are compiling results with some news in the november timeframe.
 

Jennifer51

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I talked to my neurologist about it last week and he was going to look into it. He was recommending Lithium and Rilutek though. I am still making up my mind if I am going to try them together or just one or the other. Have a full team appointment next week so if I get more information I will post it.:)


I just saw my italian neuro at an mnd clinic in London today ..he was in rome last month with the doctors involved in the italian lithium study...first thoughts are that they were not TOO impressed with the results, but all the information is being collated and will be published shortly. There are several neuros in London having a telephone conference shortly and they will discuss whether to do a similar study in the UK. I have asked to be kept informed. Plus the MND association in the UK are planning to fund a trial or two...dont have the details of what is involved yet...again have put my name forward for possible inclusion....someone WILL find something soon...just hurry up
 

givenin

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It has been awhile since I have been here. My husband passed away 5 months ago under 2 years from first hearing the news that he had ALS. Anyway I read your post on the Menantine and had to respond with our experience with it. My husband had tried very hard to get into the Edmonton study or had hoped the Calgary ALS group would start one as well which they didn't anyway he pesstered the Edmonton Doctors for a long time waiting to get in and he faded more very quickly every day. He finally went to his own Doctor with alll the info and his Doctor perscribed Menantine for him , the remark was what do you have to lose. As far as I and his family are concerend he lost about 3 months of quality of life, lost weight, many headachs among others, he ended up in the hospital dehydrated and a bladder infection and I trew out the perscription within a week he had to admit he felt better off of it.
It could be that he wasn't on it long enough or he was to far along to take it or it wasn't the right dose but I do know it made him feel much worse than he should have felt.
Our experience with it was not good. By the time the Edmonton group said yes to him it was to late for him to make the effort phisically to get there.

I hope this helps
Cheryl
 

Al

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Yes it does Cheryl. We like to hear results, good or bad. Thanks.

AL.
 

patricia1

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Lutimax

Has anyone tried or heard of Lutimax I heard it builds muscle i AlS PAIENTS ANY FEEDBACK

tHANKS pAT
 

Jennifer51

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more potential UK research

Hi AL, I am taking part in a DNA blood collection database for mnd and the nurse who is coming to take blood next week told me that there is a proposed new trial thru Dendron....(dementia and neurodegenerative diseases) ..no details yet...but the place to watch is www.dendron.org.uk
So that makes 3 potential trials coming up in the uk, with the 2 proposed trials by the mnd association...still no more news on that yet....but I have asked to be kept up to date with news and also have my name put forward for possible inclusion.
Jennifer51
 

BethU

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That's very exciting! Let us know what happens. Hope you get in one of the trials.

BethU
 

Al

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Maybe someone is finally paying attention. God only knows it's about time. I'm hearing about new trials weekly. I don't think the Lithium trial is going to show promise but I have been wrong before. I'm hoping some of this other research will go somewhere.

AL.
 

shannon k

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What is FVC? My dad was diagnosed last spring and has bulbar onset. We live in Edmonton so I am going to look into this trial but I was just wondering what that means and if it would have an affect on his eligibility.
 

joelc

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FVC stands for - Forced Vital Capacity. It is a measure of breathing capacity.
 

Blackpool

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Rick I am in the trail for memantine at the u of A hospital with Dr Chan, they need 40 patients to complete the trail so far 22 have completed the trail. This drug is being used for Alzhiemer's and Aids related dementure, the way I understand it they are hoping that the drug will do for pals what it does for Alzhiemers and Aids patients it works on the spinal colum neurons ,it isn't a cure but they hope it will prevent further nurons from dieing. I am going for my second visit next Thursday,they took me in the program and my FVC was 66% they have also waivred the MRI as I can't lie on my back and keep still. It is a 9 month program and I don't start the drug until after the 4th visit, no placibos are given. All we can do is try.
 

BarryG

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Hi Shannon, I hope that your dad can get into the study. If he goes to the UofA ALS clinic he will be having a pulmonary function test at each visit. Try to find out what his results are, the numbers are a percentage based on gender, age, weight, height and whether a person is a smoker or not. So if you get a result of 80%, for example, it means that you are able to exhale and inhale 80% of the volume that you should be able to based on those factors listed above. I have noticed that while the technicians at the pulmonary lab give me the results sheet to give to the clinic nurse no one comments on it. Maybe it is because mine is, or at least was, good so no news is good news. I have a clinic visit next Wednesday and have noticed that my breathing is much more laboured in the past few weeks so I suspect that this one won't be as good and that someone will mention it this time.

I am not in the mementine study because of the difficulty of travelling especially in the winter so if your dad can participate he can take my place. We all have to do what ever we can to support research, I wish that I could do more.

Beverly, too bad you are there on Thursday, we miss meeting each other by one day.
 

Blackpool

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We will cross paths one day Barry.
 
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