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suemar

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Just six weeks ago I woke up one morning with nostrength in my hands. After a couple of wks it didn't go away so I went to my doctor who sent me to a neurologist at St. Michael's hospital in Toronto. After doing an EMG he advised me that I could have ALS. Talk about rock your world. I was in total shock. Since then, I have been experiencing muscle twitching in my upper arms and I yawn all the time. I have been on an emotional roller coaster waiting for an MRI and spinal tap. The only way to get an earlier MRI is to check in to the hospital, which we are working on now. The not knowing is tearing me apart emotionally.

Has anyone tried glyconutrients. I would be interested in your feedback. I have an appointment with a naturalist tomorrow. I wil never give up but need a helping hand right now
 

Al

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Hi Suemar. Sorry about your luck but maybe the other tests will show something else. If you check back in the posts you will see a lot of controversy over glyconutrients. The posts run about 10 to 1 against them. They are expensive and have not been proven to do any good. There are a few people on forum here that swear by them. They feel that they helped slow the progression. The thing is we are all different and who knows whether their type would have slowed anyway. Read up on them. Be a knowledgeable consumer. There are hundreds of people out there just waiting to take money from someone who is in your situation. It seems strange to wake up one morning with no strength, ALS is usually gradual. There is hope. Take care. Al.
 

Barbie4

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good luck

Hi Suemar: My friend just went through that process at St mikes 4 weeks ago or so. I am kindof losing track of time. I am so sorry you are going through this. I hope you can get checked into St Mikes soon and that your diagnosis is not ALS. my Thoughts are with you. Stay strong.

Al, My friend Gail, was "officially" diagnosed ALS yesterday at Sunnybrook and now we know it is not PLS. She wants to be proactive in helping herself cope and prolong her life and look at every option. Can I ask your opinion and ask if you have tried a naturalpath for help? What about Chinese Medicines? you said in your post to SueMar that the natural medicine she asked about has been debated alot on the forum. How do I access those debates on treatments and medicines that you have already had.
I would just like to gather as much info on what has worked for all of you and others and what hasn't worked.

Thank you Barb

P.S. Hello Tim :-D
 

ChrissyWho

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My fiancee's (husband in a week) nuerologist recommended that he start minocycline. He is in an advanced stage of ALS due to being misdiagnosed for years because he is diabetic. Can anyone tell me if they know of this actually helping anyone? I want to do whatever it takes to make George feel better again. Any advice would be greatly appreciated.
Chris
 

Al

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Hi Barb and Chris. If you go to almost the top of the page and click on search and type in glyconutrients or minocycline and enter it will take you to the threads (series of posts) about the 2. Putting it in a nutshell minocycline wasn't proven to do what they thought it would. Further trials are planned from what I understand. Glyconutrients are expensive and most say they didn't work all that great either. An apple a day would probably do as well. Look for Caorl Deboer's posts. Her and Henry tried most all the things you asked about Barb. She is a good resource. Hope this helps. Al.
 

Barbie4

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search

Thanks for the "search" tip Al. I will definately use this. Now I won't have to ask you all the same questions you have been asked a zillion times.LOL:) That will be very helpful.

Chris, a Big congratulations on your wedding in a week. I love weddings! Hope you and George have a wonderful day.

Barb :)
 

rolark

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Alpha-Lipoic Acid

I did a search to see if anyone had ever discussed Alpha-Lipoic Acid as a possible suppliment to slow ALS progress.
I did see one post dating back to sept 04 but nothing recent nor anything that looked like it wasn't written by a scientist.

On my visit with my wife to Sunnybrook this week it was casually mentioned as making sence and being explored outside of Canada.

Does anyone have any insite into this suppliment?

Tim

See Barbie I stopped lurking :twisted:
 

ladave

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rolark said:
I did a search to see if anyone had ever discussed Alpha-Lipoic Acid as a possible suppliment to slow ALS progress.
I did see one post dating back to sept 04 but nothing recent nor anything that looked like it wasn't written by a scientist.

On my visit with my wife to Sunnybrook this week it was casually mentioned as making sence and being explored outside of Canada.

Does anyone have any insite into this suppliment?

Tim

See Barbie I stopped lurking :twisted:
Tim-

There are studies showing that Alpha Lipoic Acid slowed ALS progression in the mouse model. For Example:

http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&list_uids=11259130&dopt=Abstract

I take the R+ form of Alpha Lipoic Acid (which is more bioavailable than plain ALA) as part of my "cocktail" of supplements. I also take Acetyl-L-Carnatine with it as they are somewhat synergistic. Both can be purchased inexpensively from a variety of sources. As for results, I am a relatively slow progressor but cannot say whether these compounds or anything else I take (including Rilutek) are actually helping. I'm taking these compounds because there is some science to support the theory that they may be helpful and they are as I said relatively inexpensive.
 

Mike27

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suemar said:
Just six weeks ago I woke up one morning with nostrength in my hands. After a couple of wks it didn't go away so I went to my doctor who sent me to a neurologist at St. Michael's hospital in Toronto. After doing an EMG he advised me that I could have ALS. Talk about rock your world. I was in total shock. Since then, I have been experiencing muscle twitching in my upper arms and I yawn all the time. I have been on an emotional roller coaster waiting for an MRI and spinal tap. The only way to get an earlier MRI is to check in to the hospital, which we are working on now. The not knowing is tearing me apart emotionally.

Has anyone tried glyconutrients. I would be interested in your feedback. I have an appointment with a naturalist tomorrow. I wil never give up but need a helping hand right now
Hi Suemar,

There are many (stress 'many') diseases that look like ALS but are not. I'm not saying you don't have ALS, your Dr.'s know more than me but I'm saying wait until an absolute positive diagnosis. I had seven different doctors look at me before I absolutely believed the diagnosed. That was 13 years ago.

Question for you; did the doctor advise a spinal tap? I'm not sure why he would want this, but perhaps it is a new way of diagnosing...anybody else have a spinal tap?

Don't get me started on glyconutrients...(just kidding around!)

Keep us up on how you're doing. Life doesn't end at the diagnosis!

Cheers!
 

MarciaA

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Dave,
You said you're a slow progressor. Can you go further with that? How long have you been diagnosed? What are your symptoms so far? I know you go out dancing which is AWESOME! Yee ha!

My sister does yoga but has been getting really tired lately. She's thinking of cutting down to 6 hours of work instead of 8 so that she's got some energy left for the evenings.

Marcia
 

rolark

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Sharon
Mike,

I like your sign off "Life doesn't end at the diagnosis!"

My wife was diagnosed - preliminary in March - Finally, at Sunnybrook in Toronto this week.

When we were at St Michaels hospital - going through the battery of weed out tests inculuding blood, physical, MRI's on spine, head, neck with dye and without, EMG and every other initial in the alphabet - she did have a spinal tap as well.

Now they call a spinal tap a Lumbar puncture ( trying to make it sound less painfull I guess.)


Tim
 

ladave

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MarciaA said:
Dave,
You said you're a slow progressor. Can you go further with that? How long have you been diagnosed? What are your symptoms so far? I know you go out dancing which is AWESOME! Yee ha!

My sister does yoga but has been getting really tired lately. She's thinking of cutting down to 6 hours of work instead of 8 so that she's got some energy left for the evenings.

Marcia
I was only diagnosed as of February 27 of this year but have had symptoms since 2003. So far, I've lost a fair amount of function in both hands. I have fasciculations all over my body, but no real weakness anywhere but the hands and lower arms. My upper body strength is still good and I have lost no function in my legs that I can detect (though obviously there is denervation and/or reinnervation down there because of the fascics). There has been very minimal change in the two months since my diagnosis, maybe a slight further hand weakening. I mapped out my progression over at "Patients Like Me" and their graphs place me in the 90-95% group of slower progression.

So for someone unlucky enough to get ALS at least so far I've been fairly lucky progression-wise. Hopefully that will continue but with this beast you never know when I might take a turn for the worse. Just got to take it a day at a time.
 

Al

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Hi Tim Glad to see you're not lurking anymore. As they say come on in the waters fine. Mike they did a spinal tap or LP as they so fondly call it now. The first guy tried 4 times to get it. 4 needles in my back and my wife got mad and said get someone in here to do it right. So they ended up doing it under a fluoroscope so they could see between the vertabrae. Fun wow. They wanted to see if the fluid was cloudy. If it was cloudy it showed a better chance of not being ALS. Just my luck it was clear.
 

ladave

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Messages
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I had a spinal tap during my evaluation at UCLA in 2004 (where they got the ultimate diagnosis wrong). I was told the purpose was to see if I had Multiple Sclerosis. When the test came back clear, I was quite releived. Little did I know.........

The test was relatively painless. However, it so freaked me out that I had a full-blown panic attack right in the middle of the test and nearly passed out. If I ever have this test again I'm going to load up on Ativan:)
 

Al

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Mine the first time was not without pain. 4 Times he tried. No fluid. Next time they did it right. I'd have about 6 wines before I did that again.
 
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