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I am glad it has helped you. My wife, Kay, started using it when she was first diagnosed and had no side effects. Our insurance covered it, except for a small co-pay. The researchers are looking at any and everything that might cause, or help, ALS. They start with analysis, then go to a mouse study, then to ALS patients. Kay participated in a clinical trial of minocycline. The study showed it didn't help and might even be harmful in ALS. She had severe reactions to the drug, but she had no regrets. Even negative results help the research. We need a breakthrough on this disease, and I hope it comes soon. Until a decade ago, ALS was an "orphan disease", which is a term applied to diseases affecting relatively few people. Then, the research community decided that any drug or treatment that helps ALS might also help in Alzheimers and the other neuromuscular diseases. If that proves true, it will mean a huge market for the product. Alzheimers, etc., progress slowly and vary greatly from person to person, so research with those diseases is complicated and takes a long time. Rapid progression is the worst part of ALS, but it does mean that research takes less time, and a LOT more research funding is available now for ALS. To clarify my comment in the earlier post about aspartame and other chemicals or diet supplements, I personally would try anything that might help.
 
Alistair
I live just outside london....and I am 56...very first symtoms I had but ignored were in Jan 08...we were is america, so did not do anything until after our return, late March. First symptoms were slurred speech, extra swallowing and liquids spurting out of my mouth when I tried to swallow. March 27th saw gp for first time who said he thought I had bulbar...we have private health so saw a consultant next day, who again said bulbar, had all the tests done and waited for all the results and finally was told on 23rd April that I did have bulbar onset als. Since we were private I then had to go thru the hoops and gbe examined NHS to make sure I could get the drugs on the NHS. Eventually started taking rilzol on May 14th. I noticed an IMMEDIATE reduction in twitching, and my speech therapist noticed a difference within 2 days. Up to then I was choking on almost every mouthfull of liquid...and I have to drink a gallon a day due to kidney problems. within a week of starting riluzole there was a twang in my throat and I could then drink much more safely, albeit with a straw for all my drinks.
As for Lithium, I asked my new neuro at an mnd assoc funded clinic, and he told me that it was not legal in Europe or the UK unless you are on a trial. The good news is that the mnd association and DENDRON are going to run trials for lithium...hopefully before the end of this year. I am madly fundraising for the mnd association and have asked for my name to be put forward for the trial...even though I may get the placebo...gotta try
Please private email me if you want to know more about any of this...and do get in touch with the mnd assoc...they are fantastic. I have a free loan lightwriter and electric riser chair coming tomorrow and I have a free loan basic wheelchair which they arranged. I can still talk, just, but it is getting much harder and still walk, with a limp and slowly, but stairs are now a bummer....only really use the wheelchair for airports or shopping malls....Jenniefer51
 
Jenniefer, thanks for the reply. Iam 32 and also have private health cover. I first noticed my speech slurring October 07 but this was only happening on a saturday night after I had a few beers being Irish this can be quite a common occurance! but i went to the GP twice and then eventually he refered me to a neurologist for an appointment in May 08 and then at the end of June he told me he was 75% sure i had MND then I went back into him towards the end of september 08 for his final diagnoses which was 100%.
He then started prescribing me Rizulose so I have been taking it for just 3 weeks now. It has taken a long time to get where Iam at now and over this period (5 months) I have deteriated quite quickly my speech has become quite poor and also my walking.
However Iam looking into Lithium Carbonate but I would not be willing to put my myself up for trials as knowing my luck I would end up in the placebo group! Lithium is a drug used already on other conditions so its effects are known and the controls are in place for tests to be carried out, I suppose I will have to wait and see.
Im glad to hear that the rizulose is making things a little easier and I will keep you posted on how it effects me and how I get on with my pursuit on the Lithium front.
All the best and stay strong
Alastair
 
Alastair,

I just wanted to say welcome. Sorry for your diagnosis, but it sounds like you have a good attitude, and that counts for quite a bit!

take care, :)
 
Hi Rose
Thanks very much for the welcome. It is quite interesting and helpful to hear how everyone is getting on and dealing with it and some of the funner forums are very amusing, but I find it difficult to use the website as Im not a wizz kid on computers unfortunately! i thought I sent an email to that fello John a few days ago but seems to have vanished into cyber space!
How about yourself have you been diagnosed long? and what medication are you on? do you have any tricks of the trade that you could pass on? Im based in Northern Ireland and because the population is so small there is not that many peolple in the same situation as me which is good as I wouldnt want anyone to be in this situation but I feel it is very hard to understand from the outside.
Anyway I hope you are doing ok and take care
Alastair
 
Hello Alastair- You won't be able to private message (email) folks on this forum for a little while longer. We had an awful problem with spam so they had to set up a system to weed out fake members.

Meanwhile, you are doing fine. Ask anything you want to know about how to use the site or about MND, and folks around here will be glad to help. As you keep visiting and post a few more responses, the software will learn that you are real, and full membership will kick in soon for you. Cordially, Cindy
 
Hi, Alistair ... wanted to add another "welcome, glad you found us!"

I have bulbar-onset (slurred speech, swallowing problems, etc.) After 2 years of symptoms, I was diagnosed with ALS in May and put on Rilutek. For me, it seemed to make my symptoms worse, so I stopped it after a month. But if you're able to tolerate it, as you and many others do, it can make a difference in extending your life, so it's worthwhile.

ALS is slowly progressing into both my hands and arms (the left one is worse) now, but I'm still functional (except for my speech), and my legs are still working OK, so I am grateful for that.

I'm taking part in a clinical trial of a med called "Zenvia," which helps calm emotional outbursts, which are common in bulbar ALS. It is working for me, and I find it quite beneficial, giving me more energy and a little more mental clarity, too.

Take care!
 
Alastair...

Hi, i see your questions have been answered about the private messaging function on here. Just keep posting, and it will be available soon.

I used to go to Belfast when I flew internationally. The driver for the transportation company that picked up the crew at the airport was willing to give us quite an education about the history of Northern Ireland during the ride out to and from the hotel. I learned a lot.... sometimes one of the crew would say, oh no, don't get him to talking, but I would go over and sit close, so I could hear. Of course I only understood about 2/3rds of what was said due to his Irish brogue (or my lack of one, whichever way you want to look at it LOL)

One thing about the Lithium, as it was explained to me at the ALS clinic, one can have a doctor prescribe it, as it is already approved of use, in that it is not an experimental drug. However, if one has taken Lithium via that method, then one is excluded from participating in the trials.

Anyway, its something you might consider, is to have your GP or other doctor, prescribe it for you, rather than the trials. See if you can get it now.

There are a few on this forum that have done this, and if you do a search about Lithium, you would be able to find their feedback. I believe Jeff (Zen Archer) has a link to his blog, and he has his dose, etc on that. (Sorry Jeff if that is not correct, I don't have time to go verify this).

Good luck to you, and don't be a stranger :)
 
Thanks for that, I thought you had a block on Irish men!
 
Hi Beth,
Thanks for the welcome. I first slurred my speech about a year ago now but only really since May 08 has my body been effected especially my left side for some reason, but eventhough my rightside is still pretty strong I find it difficult to open things and do stuff as I used mostly my left hand. My walking was become very robotic but I find if I use a excercise bike for 30 mins at a very low level it seem to free me up a little and walking become easier. I took my nephews to an amusement park called Funderland in Belfast a couple of days ago and was walking like a robot on the way in but after a few rollercoast rides I was walking much better! now Iam not suggesting that it did me any good but its is strange the effect it had.
I must look into "Zenvia" med you metioned as I have a wild habit of taking fits of giggles which can be fun sometime and very embarressing other time, no tears so I suppose I should complain too much.
Thanks again and Take care
Alastair
 
Hi Rose
I know a good few Belfast men like you have described there and even I only understand 2/3rds of what they sat too! I live about 50 mins from Belfast so I would know it reasonably well as I would have had one or two beers there in my day, it has become a good city to go out in since things have calmed down a bit.

My doctor is going to prescibe me Lithium hopefully on wednesday as I had my blood tested lastweek so hopefully it will not effect me and do me a bit of good. I will try and check out the link on Jeff's site

Thanks for that and take care
Alastair
 
LITHIUM in the UK?

hello alastair...looking forward to being able to email you...
Lithium from your doctor?...let me know if you get it...I was told at an als clinic that it was not allowed in the UK or europe, so I am hopeing to get it on the new dendron trial which should happen early next year...it is being run in the uk so they can compare with the trial in america. There is a conference of neuros in london this week, so I am waiting to hear from my neuro about other possible trials or treatments...hurry up you neuros. Jennifer51
 
Hi Jennifer, i will keep you posted on how I get on, Lithium it is being used on bi polar conditions world wide and monitored why could it not be prescribed to you to see if it helps?
 
Lithium in the UK

Hi Jennifer, i will keep you posted on how I get on, Lithium it is being used on bi polar conditions world wide and monitored why could it not be prescribed to you to see if it helps?

my neuro at an mnd/als clinic said LITHIUM is legal for limited purposes in the UK but it is not legal to prescribe it in europe or the UK for mnd..(he is italian working in england for 20 years and is in contact with the doctors in Rome who are running the italian lithium trial). There is going to be a UK trial of the drug through DENDRON Dementia and neuro degenerative diseases..but he says at present you cannot get Lithium for mnd. I did ask if I could go on it, but was refused...the only way is for me to go on the trial, IF I meet the criteria...then I might only get the damn placebo....
 
did you get lithium

Hi Rose
I know a good few Belfast men like you have described there and even I only understand 2/3rds of what they sat too! I live about 50 mins from Belfast so I would know it reasonably well as I would have had one or two beers there in my day, it has become a good city to go out in since things have calmed down a bit.

My doctor is going to prescibe me Lithium hopefully on wednesday as I had my blood tested lastweek so hopefully it will not effect me and do me a bit of good. I will try and check out the link on Jeff's site

Thanks for that and take care
Alastair

Just wondered if you did get thelithium...as I said in another reply, I thought it was not licenced in the uk for als/mnd. The mnd association with Dendron are about to recruit for a new uk trial with lithium...details are on the mnd assoc website, and I have been sent an email from them with all the legal who ha about it, and who qualifies etc. jennifer51
 
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