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Graham
3rd January 2011, 19:16
Hi MNDA,

Sorry for being pushy, but a list of items is building up!

1. Can we have winter fuel payments?

2. Latest clinical trial data?

3. Scope of benefits from new drug 'Neudexta'?

4. Investigation into MND spontaneous recovery reports from CB, Gareth, GT, Paul-lfc?

Best wishes

Graham

Robyn Copley-Hirst
4th January 2011, 10:37
Hi Graham,

I'll do what I can with your list... hopefully I'll have some information here for you shortly.

Robyn

Robyn Copley-Hirst
4th January 2011, 10:55
Hi Graham,

Have I got the right person?

Gareth Buckett from Southborough, Kent reported improvements of 30% in his grip after Hyper Immune Serum treatment... we know this as Aimspro.

What I can tell you is that Gareth is not known to us, so there is limited information on his case and it would not be commented on here by us if we did have personal information about an individual case. Aimspro remains an unproven treatment (http://www.mndassociation.org/research/unproven_treatments/index.html). A useful investigative article explaining this treatment for any readers who are new to it is here (http://www.alsuntangled.com/pdf/ALSUgoatserum.pdf)

We would be very interested in finding more out about this case, but at this time Gareth is not known to us and the treatment remains unproven. We have had a member who signed up and posted several posts detailing this, but unfortunately has not been back yet with further info.

As for the other cases, the individuals are welcome to discuss their symptoms and lives here themselves, but we would not do that on their behalf. If their specialists thought they required further tests to look into their situations further then it would be something they should raise with their various specialists... and if they wished they couild report back to you all here on the forum :)

They're very welcome to discuss their own case here in response to your questions, however!

Robyn

Robyn Copley-Hirst
4th January 2011, 11:27
http://clinicaltrials.gov/ - ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals

There is also the information we have on the Research section of the MND Association website.

As for Nuedexta:

They have their own website which has lots of information, including trial results at: http://www.nuedexta.com/

As for the scope of the drug itself it has been tested for the pseudobulbar affect - or laughing and crying outbursts. We had a question on the forum a while back asking if this also extended to other emotional areas such as panic attacks etc. Despite being a very valid question, we just cannot say because the trial did not ask this question.

If there are any other side effects they will become apparent once the drug is made available, but the drug is made to target laughing and crying outbursts and this is what it tested for... so this is its scope so far.

Liz Burr
4th January 2011, 13:26
Hi Graham,

I have some information regarding question one of your list. ("Can we get Winter Fuel Payments?")

Unfortunately you are only eligible for this if you are aged over 60. However, there may be other payments that you can tap into. The Macmillan Charity have produced a fact sheet about paying for fuel which you may find useful. You can find it by clicking on the following link http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/fuel_poverty/keeping_warm_factsheet.pdf

You could also contact an organisation called the Home Heat Helpline, who can also advise you on any benefits, reduced tariffs and special payment options, as well as any grants that you may be eligible for, such as free home insulation. You can contact them on 0800 336699, or have a look at their website - http://www.homeheathelpline.org.uk/

You may be interested to know that Macmillan has also organised an open letter calling for people with terminal conditions to receive a cash rebate from energy companies. The MND Association was one of several leading charities to sign this letter. We hope it will persuade Energy Secretary Chris Huhne to ensure that this rebate becomes available.

I do hope this helps but if you have any questions please do get in touch.

Best wishes

Liz

Liz Burr
MND Connect Advisor

Graham
4th January 2011, 22:55
Hi Liz, Robyn,

Thanks for your help.

On Nuedexta the basic but informative block diagram of the basal nuclei function is revealing.

http://en.wikipedia.org/wiki/Basal_ganglia

The emotional spark originates in the Cortex, but then cannot be inhibited in the basal ganglia/nuclei?

Best wishes

Graham

Jacqui Priestley
5th January 2011, 15:11
Dear MNDA - can I add to the "To do" list please? Can we please organise an "ask the experts" session for MND sufferers in the UK? Perhaps on a regional basis to start with to minimise travel burden expense? My idea would be for 3 presenters, say Brian Dickie, Martin Turner and Prof Al-Chalabi to each present to the group the latest MND research efforts in their particular fields in as non-technical way as possible with an opportunity for questions afterwards. This could have the added benefit of encouraging greater participation in Martin's Biomox study and the DNA databank. I also thought GlaxoSmithKline might want to send a rep since their trial is still recruiting. What does everyone think? I suggest May!!!

Graham
5th January 2011, 18:04
Hi Mrs P,

This could be organised online so we can all watch.

Best wishes

Graham

rog
5th January 2011, 18:44
There seem to be some good answers coming from the MNDA in this thread, why not post a list of questions here and see how it goes?

I like the idea of a DVD that could be given to newly diagnosed individuals and their families - The association did hand out several books for free [face value of 30plus] to any one who wanted them, when my family went to our first social - the DVD could be a readily accessible extension of this good work.

Robyn Copley-Hirst
6th January 2011, 12:29
Dear MNDA - can I add to the "To do" list please? Can we please organise an "ask the experts" session for MND sufferers in the UK?

Mrs P,

I've been in touch with our Conference & Events Team. They're making the final arrangements and bookings to the Spring Conferences. For anyone who does not know, Spring Conferences are events for people affected by MND. Research is on the agenda at these events and reps from our own Research Team attend, along with researchers whose work we fund.

The Team inform me that by the end of the week all arrangements will be finalised and then information will be placed on the Events Section of our website. I'll place an announcement on the forum to direct everyone to the information once it's up. I should be able to link you there by next week.

If there is an event in your area, Mrs P, it could be of interest to you.

Best Regards,

Robyn
Forum Co-ordinator

Graham
7th January 2011, 22:44
Hi Robyn,

The Society of Amateur Neurologists is up and running!

Please could you make "Your evidence" sticky, thus prompting more responses.

Best wishes

Graham

Graham
8th January 2011, 00:55
Hi Robyn, Rog,

I would like the thread "Your Evidence" to be released as soon as possible.

Further to my personal experiences:

1. My 1st L.P. was positive for anti-bodies.
2. Both 1st and 2nd L.P. was high in protein.
3. The top consultant neurologist at SRI said he would look into Mycoplasmas and get back to me. He has since discharged me from his care.
4. My current consultant has said "some people do have high protein levels in their CSF" without specifically proving I was Mycoplasma negative.
5. Evidence is evidence!

Am I frustrated?

Best wishes

Graham

Graham
8th January 2011, 18:05
Hi Robyn,

Your private message to me was swallowed by my virus filter. Please write into my 'intro' thread.

Best wishes

Graham

Robyn Copley-Hirst
9th January 2011, 13:54
Hi Graham,

I sent you a personal message...well two...last night. I've emailed them to the email address you registered on the forum with. Sorry you've had virus filter problems as I wanted to get everything sorted asap as it's nothing complicated.

If you are able to, private message me back on the forum, I'm not in the office again until tomorrow...so any emails I can only access then.

It's not something I can write into your intro thread as it was addressed privately to yourself :)

It's my Father-in-laws birthday today. I dashed away to check for messages from you, I'll check back later when I can but my response may not be instant :)

Hopefully the email will find you well and not be filtered into your junk folder. If this attempt does not work let me know and I will email you from my private hotmail account and see if that works!

Robyn

Robyn Copley-Hirst
10th January 2011, 10:52
I like the idea of a DVD that could be given to newly diagnosed individuals and their families - The association did hand out several books for free [face value of 30plus] to any one who wanted them, when my family went to our first social - the DVD could be a readily accessible extension of this good work.

Hi everyone,

I've been in touch with our Care Information Co-ordinator and this was the feedback:

We are due to redevelop the Personal Guide this year. We will be looking at alternative methods of delivery as part of this work and will log the fact that someone has suggested a DVD. This would obviously come under budget considerations as well, which is always our greatest limitation and would mean we would research how useful people would find this and then also find the budget for it.

In the meantime, we have been looking at alternative formats - as some people with MND find it difficult to read, due to physical impairments. We are currently in the process of completing some interim audio recordings of all the personal guide sections (so far 8 out of 11 have been recorded and are in the editing process). These have been produced on a minimal budget but should provide a clear audio resource. They will be re-recorded again when we redevelop the Personal Guide.

I Hope that info is helpful to anyone interested.

Robyn

Graham
18th January 2011, 17:27
Hi Robyn,

An idea is that the audio recordings be linked to this site somewhere. This would save money and make the recordings easily accessible.

I would like the MNDA to consider a method whereby I and others may lodge characteristic data about our variants of MND. It is a fact I was face to face with two people in 2006/7 who went on to develop MND. Another feature of my MND is sticky stingy sweat, particularly around the eyes. There are a range of items.

Best wishes

Graham

Robyn Copley-Hirst
18th January 2011, 20:49
Thanks for those ideas, Graham.

At the moment there isn't the facility to collect characteristic data on the forum, although we could make a section in the user profile. I'll raise the idea of linked recordings, the MND Association is pretty good about trying to make lots of information accessible online on the main website.

Regards,

Robyn

Graham
4th April 2013, 18:38
Two years on, still no Neudexta.

Pathetic, MNDA.

Alienista606
4th April 2013, 19:12
Mr G...
how are You???

btw nice tread....

Graham
5th April 2013, 01:57
Hi Max,

Still caged in this hell-hole with my tormentors.

Mark Toad never replied.

Thanks for the thought. You have a lovely daughter.

Regards

Graham

Andrew
5th April 2013, 14:16
Hi all,

I have just received a response from Avanir Pharmaceuticals in the US, the company responsible for researching and producing Nuedexta:

“We are anticipating a vote on European approval at the April CHMP meeting. If we are successful at surmounting this regulatory hurdle we anticipate approval for NUEDEXTA sometime this summer.

For full information on NUEDEXTA from a US perspective, please see www.nuedexta.com"

I will try and keep you up to date with any further developments.

Best wishes,

Andrew

miranda
5th April 2013, 14:50
Yeeehaaa!!! Greatest news!!!// This drug is for those of us with emotional lability - unconrtrollable laughing and/or crying. Can't wait.

Graham
5th April 2013, 21:37
Andrew,

Thank you for your prompt response.

'Better late than never' as far as Nuedexta goes.

Is anyone lobbying for this treatment at the vote?

Alstdi reports from forum that other als bulbar symptoms, speech and swallow, improve with Nuedexta.

Alan Livett
5th April 2013, 21:42
Hi Andrew

Have tried to access your link to nuedexte.com without success. Is it a problem with the link or my incompetence?

Regards

Alan Lvett

Andrew
5th April 2013, 21:51
Hi Andrew

Have tried to access your link to nuedexte.com without success. Is it a problem with the link or my incompetence?

Regards

Alan Lvett

Hi Alan,

The link should work for you now. Let me know if you have any further problems.

Graham,

I do not have any details about the vote, and therefore any potential lobbying, but I can do my best to find out more.

Best wishes,

Andrew

Laila
2nd May 2013, 00:00
Is there any further news on Nuedexta use in the UK. I have seen very good reports on its use in USA on the PLM website where it is FDA approved??

Also I think that someone mentioned (Pete? ) on another post that dextromorphan (if that is right spelling) which is a component of Nuedexta is in some cough medicines?? Is anyone using a cough medicine for that, which brand etc and is the cough medicine effective?

Thanks, Carol

pete
2nd May 2013, 09:19
Hi Carol,
hope your ok, yes it was I who was taking the cough remedy , and yes although like most everything else we try , I can say hand on heart it does work for me , I am not saying it's a miracle cure but after taking it intermittently its effect can be judged, I know for certain when I am next due a dose because my swallow does improve after , and as we all know if it works then you continue taking it as and when you need too, and my speech therapist is still chuffed I can still eat most things with a bit of care and common sense, despite knowing it might not last forever, anything that helps and does no harm ,has to be worth a try.

Pete
X

Laila
2nd May 2013, 10:00
Hi Pete,

Thanks for the information. Which type of cough medicine are you using? I think some have the dex in it and some don't. I asked a friend to get some which I thought had dex in it but when I read the label it didn't have it , grrrrrr. PLM reports on Nuedexta are positive for bulbar symptoms as well as emotional lability.

Carol

miranda
2nd May 2013, 11:14
I have just heard from Prof. Talbot that Nuedexta has now been approved and should be available in 3-4 months. I intend to be first in the queue!!!

Laila
2nd May 2013, 12:02
Hi Miranda,

thats good news. Thanks .

Carol

Ellie
2nd May 2013, 13:37
Hi Pete,
Thanks for sharing the cough medicine information regarding dextromethorphan.
Can I ask you how much you take and for how long? I know that everyone is different, but your experience is enlightening.
thanks,
Ellie.

Andrew
2nd May 2013, 15:38
I have just heard from Prof. Talbot that Nuedexta has now been approved and should be available in 3-4 months. I intend to be first in the queue!!!

Hi all,

Our research team are in contact with Avanir Pharmaceuticals, the company responsible for researching and producing Nuedexta. I will hopefully be able to bring you something more concrete on this soon.

Best wishes,

Andrew

pete
2nd May 2013, 15:41
Hello Carol,

It's from boots and it's Robitussin dry cough medicine blue and black label , it's clearly marked that it has the dex in it, I tend to take it twice a week , two doses per day, but it pays to try it to see if it works for you, the time it took for me to see a noticeable difference was a week , so lets hope it does the same for you, I can say I don't suffer from lability so if that's another. Positive then it's worth the four pound a bottle .

Pete

Laila
2nd May 2013, 17:30
Pete,

Thanks for the info . I have asked a friend to get some for me.

Carol

pete
2nd May 2013, 20:24
Hi Ellie,

Just replied to Carol with the same info , so. Hope. It will work for you, till we get a proper drug, that will hopefully work for many of us, the one thing I can say this cough medicine is no where near the strength it is felt needed, but at four pound a bottle and it's available NOW, not in months or years, it won't harm you or break the bank either !!.

Regards
Pete

Alienista606
3rd May 2013, 06:23
Pete
yes you a right but overdose is habit forming cos Dx

http://en.wikipedia.org/wiki/Dextromethorphan.

works like dope in large overdose so be careful

miranda
3rd May 2013, 11:00
Max - your mailbox is full so I cannot reply to your pm.

Ellie
3rd May 2013, 11:42
Thanks Pete,
As you say, it's available NOW. Worth a try.
Ellie.

Andrew
3rd May 2013, 14:45
Hi all,

I have spoken to our research team and can give you the following update on Nuedexta:


We welcome the news that Avanir Pharmaceuticals Inc have announced that their drug NUEDEXTA has received a positive opinion and a recommendation for it to be approved for the treatment pseudobulbar affect in neurological disorders by the Committee for Medicinal Products for Human Use of the European Medicines Agency (EMA).

Assuming the EMA approve this treatment (in the next three months) the likely next steps would be marketing authorisation in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA). Once this has been authorised doctors in the UK will be able to prescribe NUEDEXTA.

The Department of Health would then have to agree a price for the drug and then Avanir Pharmaceuticals would very likely wish to seek a technology appraisal for the National Institute for Health and Care Excellence (NICE). If this is granted, it will mean that it is compulsory for the NHS in England and Wales to fund this treatment.

We have contacted Avanir Pharmaceuticals enquiring about the likely timescales in which this treatment would be made available for people living with MND in the UK. We are currently awaiting their response.


I hope this helps,

Best wishes,

Andrew

pete
3rd May 2013, 19:41
Hi Max,

Sorry I have just read your post, Hope your Ok and the family,, Thank you, but the amount I take, I doubt it will become an addiction, unlike the Brandy and the Pipe !!

Regards
Pete

Rory
3rd May 2013, 19:51
Pete

Stop the pipe
Stop the brandy
And it stops the cough !


Dr Rory

MND Connect helpline