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15th October 2014, 21:59
Hello all!

I am a friend of someone who has recently been diagnosed with MND - likely to be ALS type, I understand. She has been given very little time with professionals to discuss her diagnosis and treatment. Seemingly it has been tests, diagnosis, riluzole and go and live your life, pretty much in that order and with no explanation for anything. To say we are bewildered, angry and in disbelief is somewhat of an understatement and I am guessing this is similar to other friends and families as well as those with the diagnosis for this awful disease.

My friend is very much in two minds regarding the riluzole. She is accessing alternative therapies at present, which is having a positive effect on her well-being, but really cannot decide on the benefit of riluzole, given it only has a three month success expectancy.

Can anyone else give me any guidance or thoughts on this drug - is it working for some, not for others? I am posting this on her behalf and will pass feedback to her. Any help on this would be really appreciated. Many thanks in anticipation ..........

15th October 2014, 23:19
Hi cpatt,
As ever sorry you find yourself here. Great place to be for help and advice but regrettable that anyone has mnd .
You will be aware possibly that no two people will have the same experience with this illness with speed and direction varying from person to person. All the medical profession can do is react to each new symptom and relieve it as best they are able and with varying degrees of success. My wife died just over 2 years ago and although she started on Riluzole because of the damage to her liver she had to discontinue . Your friend will have regular blood tests to ensure she has no side effects from the Riluzole. It is the only drug approved for use with mnd and there are mixed views on it's effectiveness. Clinical testing says it works but for the individual you can never be certain. If it is doing no harm then it has got to make sense to take it. If you take it and it works you get the benefit. If you don't take it and it works you can never get that benefit. Your friend should have a team of experts assigned to her care. These will include a neurologist, occupational therapist, physiotherapist, speech therapist and dietician who will offer whatever assistance they can as the disease progresses at 3 monthly meetings generally but also by phone and house calls as appropriate.
The advice generally given is to put your affairs in order(make a will, know where the life policies are etc.) and get your bucket list out and do what you can while you can. There is a body of thought that vitamins and supplements can make a difference. Look at fishmate12 supplements thread on here. Ray (fishmate12-don't ask me why he is so called I have no idea) had normal progression for the first 9years of his illness before managing with vitamins and supplements to stop the disease in it's tracks and has remained the same for the last 5 years when most people would have died. He is now on a mission to recover some of what he has lost to the disease. I suggest you read his protocol on the the thread I mentioned above and consider trying some or all of what he has done. Talk to her doctor to make sure there is nothing suggested which may be detrimental to her. If you want advice send a pm to Ray who would love to offer help and advice. You will have to do 5 posts I think before you can pm but you can say hello on here another 4 times and you will be free to go.
Good luck with it all and I hope you can find something to make a difference.


Night walker
16th October 2014, 05:19
Hello Catt,
You are in the best forum for advice, support, tidbits of info and so much experience from other carers and folk who suffer with this wretched disease that is not anywhere else and a virtual family you can laugh, rant and cry with. Really sorry you've joined but it's good you found us. There are a few threads about taking Riluzole or Rilutek (another name for the same thing). My hubby takes it, no side effects been on it for 5 months. I have soaked up Fishmate 12 supplements thread and my hubby's progress is slow but he is progressing nonetheless. The people in the MND Association are also incredibly helpful and you can ring them for any questions they will point you in the right direction.
Hope to see you back here and take strength from the fact you are not alone on here in all this.
Best regards

16th October 2014, 10:59
You will be shocked, hurt and disappointed at first, you will be told things that will frighten you, but please do not despair. We have all been through the same and the support from clinical staff, the MND Association and everyone on this forum is fantastic. A positive attitude is important, so never give up.

16th October 2014, 11:19
Welcome to the forum Cpatt;

Your feelings are normal and most of us have had them. There are quite a few threads on riluzole and I have taken it for five years. It is the only approved treatment.


16th October 2014, 12:21
Hello cpatt
I am sorry you find yourself here!!
When I was told I was suicidal, searching on the web didn't help untill I searched for MND survivors. so have a look at Fishmate 12 suppliments on this forum in the research thread, Steve Shackell, The proletariot protocol from the ALS tdi site and the Deanna protocol from winning the fight.
Look to the future and research for yourself .


16th October 2014, 12:37
Hello cpatt,
Much the same as we all had, sadly lacking considering the implications on your future that the medical profession tend to write you off once diagnosed. As for any treatment that takes seconds to discuss as there isn't any treatment as yet, and only one drug that's available that is proved to have some benefit albeit very limited and only for those who do not suffer any adverse side effects from taking it. Like all illness we all react very differently to the news ,that we will not get better and it's a matter of time, staying positive and not being sucked into the pits of despair is hard, but the alternative is far worse. Yes you can adopt the woe is me attitude or you can live what time you have left ,living life as best as you can, MND is a disease no more than that yet we hear all manner of descriptive terms attached to it ,hardly surprising that this removes any hope for some and just adds to the conditions reputation as being hopeless to try to fight it ,no point as we are doomed !!, I have never really understood that thinking as I prefer to make the most of my days rather than be a miserable old grump making everyone else around me equally miserable . So I urge you to try everything you can and do as much as you can , have no regrets and live life as well as you can ,never give up hope .

16th October 2014, 17:54
Hi c.patt,

There are encouraging treatments available in the USA coming online soon. Look at BrainStorm and Neuralstem in Research. Shortly you friend could be on her way to the USA for treatment.

Alternatively you could join our campaign to get this treatment on the NHS here in the UK.

16th October 2014, 21:06
Thank you John for your reply, and I am truly sorry to hear that your wife did not win her fight with this wretched disease. I know my friend is concerned about the effects of this drug on her liver, but then I have had a reply from one chap who is in his 5th year of taking it, so it is clearly working for him and highlights or should I say reinforces that this disease is individual and development (or not) differs from one patient to another. Its humbling that you still follow these forums and pass advice on about your experience, so on behalf of my friend and me, thank you for taking the time to respond.

16th October 2014, 21:20
I think that's if she's reasonably well the drug won't cause a problem. She can have her liver/kidney function tested before and regularly after so that there is no real problem. It does not suit everyone but it's worth a go. Mnd varies so much between different people, both in time scale and the ways it affects people.

Regards Terry

16th October 2014, 21:33
Hi Night walker,

Thanks for your post. I am so pleased that your husband's progress is slow. I pray for this for my friend. Thank you for reinforcing the Fishmate 12 supplement thread. I have read about this. She has started on the Deanna Protocol, and we have been in touch with the someone at the Protocol for advice. I just cant believe the lack of compassion really from the medics (Professor and Registrars) who simply shrug, give her ten minutes of their time, have no answers and say "go live your life" - may be this is just my anger - who knows. I have copied the posts to my thread to her. To know that complete strangers are willing to give their experience on such a personal and devastating matter, is humbling in itself. Thank you and I wish you and your hub all the best in your journey x

16th October 2014, 21:36
Hi Trevorhb - thanks for your response. We are working on that positive attitude. I am a great believer in PMA and it goes a long way when fighting something as wretched as this. I also know my friend does not needs sympathy or burdening with our own upset, so wherever I can help, I will. Thanks for your advice re the MND Association. With the replies I have had, we feel better already!

16th October 2014, 21:40
Hi Terry - wow! 5 years! That's fantastic. Riluzole seemingly agrees with you. I am picking up that this is very much an individual disease and those diagnosed will respond differently to treatment and progression. My friend is incredibly "well" and fit! Boy is she fit - which makes this whole diagnosis all the more difficult to understand and believe. Your post has been particularly encouraging so thank you for taking the time to respond

16th October 2014, 21:42
Hi pacer1971!

We are on the Deanna Protocol as of the beginning of this week! That has been a particularly encouraging find on the internet and gave us a great deal of hope. I will look at the others that you have recommended. I agree with you, its down to us to research and move forward that way!

16th October 2014, 21:57
Hi Pete - thank you for those words of wisdom! They are much appreciated. We swing between positive thinking, to anger and despair. Disbelief is also a pretty common one throughout the week. We are still very much in the early days but we have, I think, swung into action quickly with looking at alternatives. I have just found the medics response quite startling! Your post gives hope and understanding - thanks.

16th October 2014, 21:59
Hi Graham, you intrigue me!!!! I will surely be looking up your recommendations. By all means point me in the direct of the campaign here in the UK, I'd be happy to offer my support.

16th October 2014, 22:55
The Doctor at our Gp practice told my husband "you have had it for 2years that means you've got 3 years left" he was very blunt and said do you want me to sign you off work, then it was like your times up goodbye. We were shocked how he had given this news. His neurologist was shocked too has he hadn't even given a definite diagnosis then. He was more helpful and seemed more willing to explain things. Luckily there are other doctors at our practice because we won't be going back to see that one.

17th October 2014, 06:00
The Doctor at our Gp practice told my husband "you have had it for 2years that means you've got 3 years left" he was very blunt and said do you want me to sign you off work, then it was like your times up goodbye. We were shocked how he had given this news. His neurologist was shocked too has he hadn't even given a definite diagnosis then. He was more helpful and seemed more willing to explain things. Luckily there are other doctors at our practice because we won't be going back to see that one.
Sue. Sue I had a horrendous time with my previous GP, I took the decision to change and it was the best decision I have made since this started for me. I couldn't be more supported and encouraged, I went there on recommendation from neighbours who are in the "business". One is a Paliative Care consultant so high recommendation.

Best wishes


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