new- have questions

[ladave]

Hi-

I'm Dave from Los Angeles CA USA. Found this site web surfing for ALS info. I've been given a preliminary diagnosis of als pending outcome of blood tests and mri. My symptoms began about three years ago with fasciculations in arms, then weakness in hands. I received a diagnosis last year of cervical spondyliosis and underwent what now appears to have been an unnecessary surgical procedure on my back. Weakness and muscle atrophy has slowly spread into shoulders and side, fasciculations now in legs and feet but walking still okay.

So many questions, here are a few-

What is the relationship between fasciculations and atrophy? Obviously fasciculations indicate nerve disruption, correct? How can I maintain my leg function as long as possible?

Supplements- so many, all expensive. COQ10 seems like a potentiality as it is undergoing testing, so I've put myself on 1200mg/day. Also taking milk thistle and burdock root. Was looking into creatine but saw double-blind study failed. What seems to work without bankrupting someone?

Rilutek? I'm sure it will be offered, should I take it?

How do I keep a positive approach in the face of this? I know how important that is but am terrified and depressed (have history of depression).

Any help would be appreciated.

 

[Al]

Hi Dave. Sorry to see you here but glad you found us. Fasciculations don't happen in atrophied muscle. If you have them it's kind of like a blessing in disguise. Bad to have them but good to still have muscle left.
It was suggested to me by my Neuro to take Vit C, Vit E, and CoQ10. I also take Creatine Monohydrate. I take 200mg of CoQ ,400-800 mg of E depending on the day and 500- 100 Vit C depending on the day. I am back on Rilutek. Went off it and got worse. Don't know if that caused it but I'm back on it. Rilutek is expensive and gives me stomach trouble sometimes so the money would likely come into the equation. $660 per month up here. As for the attitude it takes work. It is not easy being upbeat about all this but if nothing else cheers you up just think of all the nice people you wouldn't have got to meet here. Take it day by day my friend. Take care. AL.

 

[ladave]

Al-

Thanks so much for the response. I see you take creatine- do you think it helps? The double-blind study results I saw on it were not encouraging. These supplements can be pretty darn expensive.

I'm pretty sure my medical insurance will cover the lion's share of the Rilutek- at least so long as I can keep working. I'm surprised at the cost in Canada- thought you guys had state-sponsored medical insurance up there (I'm sure I just hit on a touchy subject .

It is very nice to have found this Board.

 

[TBear]

Hi Dave:
Nope, we don't have state sponsored medical insurance we have state provided health care... but it doesn't cover prescription medicines. We get insurance to cover these but judging by the number of Americans who come up here to buy the stuff it they must be a whole lot cheaper up here than down there... probably the only thing.
Take heart Dave... ALS, as AL said, is battled one day at a time. At least in L.A. you won't have to battle much of a winter too!
CHeers

T.

 

[Carol Deboer]

Hi Dave,

Sorry to hear about your diagnosed. However, I am happy that you found us here. There are so many different alternative remedies out there, and yes they can be be very expensive. Be careful and do not get taken in by mongers. There are lots out there that prey on als patients. We tried a number of different things here with Henry, but, still spent lots of money and in the long run wonder if they did much good. Some of the things we did I am sure helped him live for as long as he did, for that I am sure. Ultimately, do what is best for you, if if works for you, then that is all that matters. Depression is a constant battle with als. You just have to go with the flow. As Ted said, go day to day. Hope you have a good support system in family and friends, that is so important, and remember we will all be here to help answer you questions and try to lift your spirits when you need us too. Bless you.

Stay Sttrong. Carol

 

[ladave]

Thanks, Carol. I cannot believe I just found this wonderful little community and now it is apparently closing. Perhaps a bad metaphor for this awful disease I've been told I have. Well anyway thanks to all who have responded.

 

[Al]

Don't give up the ship yet folks. We ALS patients are a scrappy bunch and I for one don't plan to give up the ship yet. Keep coming back for now. We're not done yet.

 

[Al]

As I said we aren't done yet. We will have a new site better than the old with all the same people. By this time next week we should all feel at home.
alsforums.com will be our new home.

 

[Granny]

Bravo, Al! I know you played a big part in getting this new site up and running.
Thanks a bunch.

 

[wewillbeatthis]

Al A great big Hug all the way from New York City....

As I sit at my desk in Wall Street and find that we have a new site I wish that I could come to Canada and meet my other family.... I tossed and turned these past couple of nights not knowing what I was going to do without you all.... Thank you GOD for sending us these ANGELS that have made it possible for our site to keep going....

Jen

 

[Al]

Thanks Jen but David did it All. I just offered to help.

 

[Jane]

Hello Al, I don't post often , but this new site is great. Thank you so much.
You and David have done a wonderful job.
Jane

 

[Al]

Oh by the way Jen, last time I checked we still allowed people from NYC to visit Canada. We like Americans. Just don't bring the Vice President with you to go moose hunting. LOL.

 

[ladave]

I'm glad this site is staying. Hope I'm around a long time to stay in touch with all of you

Dave

 

[David]

Yes, please stay Dave.

We're trying to make this the one site where everyone can chat. At the moment, people afflicted with these related diseases are strewn throughout the Internet on different sites, forums and chat groups.

How much better it would be, and more helpful if everyone was able to chat at the same location. More people, more care, more minds, more information, more help. That is the goal.