PDA

View Full Version : A Definitive Test for MND



Graham
5th April 2012, 22:34
Hi All,

Following last week's announcement that motor neurones can be faithfully derived in a petri dish from one's skin cells, that show MND, for the first time there is a test for MND. :cool:

Robyn says "If you found Sonia's link interesting you might also like this one from our news: Association-funded stem cell programme achieves milestone"

Best wishes

Graham

aweathers
22nd April 2012, 00:29
it is actually a great news that there is a test that is definitive for MND after years off research and testing. this is such a great discovery in the field of medical field as there is a constant struggle to diagnose and find cure for many diseases that has yet to be discovered. I am sure that with this new test there will be more chances of better treatment for people suffering from MND as well.

flipjg
27th April 2012, 11:24
How/where can we request this test? Is it going to be widely available quickly?

Graham
29th April 2012, 18:42
How/where can we request this test? Is it going to be widely available quickly?

Hi Flipjg,

We should ask/pressure our neurologists for this test. Also the MNDA should be acting on our behalf.

Having spent 800,000 on this research, we should be reaping the benefit.

Robyn, any news from the research team?

Best wishes

Graham

Robyn Copley-Hirst
30th April 2012, 10:31
Hi All,

Following last week's announcement that motor neurones can be faithfully derived in a petri dish from one's skin cells, that show MND, for the first time there is a test for MND. :cool:



Hi Graham & Everyone,

Whilst it's true that this is a fantastic milestone, the aim of the research was to generate and recreate what's going on inside Motor Neurone Cells in a dish. This would provide a better model of MND in a dish and help researchers look more closely at causes and hopefully be used to screen potential treatments.

The research was not to create a diagnostic test for MND. At this time that remains a clinical diagnosis. It's simply not possible to use this sort of experiment to diagnose MND, so, in terms of a diagnostic tool, this sort of experiment just isn’t feasible as yet.

We will, as ever, keep everyone up to date with current research and news stories. Our Research team can be contacted at research@mndassociation.org if anyone wishes to ask anything further of their knowledge in this specialist area.

I hope that helps to clarify the story, the news is still fantastic news, just in a slightly different area to your idea, Graham.

The original thread is here (http://forum.mndassociation.org/showthread.php?1284-Stem-Cell-News&p=9650#post9650)

Graham
17th May 2012, 22:56
Hi Robyn, All,

Thanks for the update.

Do you know if NP001 or Cogane are being tested with this technology?

Are developments in the field of stem cell implantation likely to progress as a result of this work?

I think a test for MND cannot be too much of a stretch if the core claim of this research is credible. I would like this test to prove I am indeed recovering from my MND.

Best wishes

Graham

john
17th May 2012, 23:49
Hi Robyn, All,

Thanks for the update.

Do you know if NP001 or Cogane are being tested with this technology?

Are developments in the field of stem cell implantation likely to progress as a result of this work?

I think a test for MND cannot be too much of a stretch if the core claim of this research is credible. I would like this test to prove I am indeed recovering from my MND.

Best wishes

Graham
Hi Graham,
Do I read correctly that you feel you are getting better? If so how?

John

Robyn Copley-Hirst
18th May 2012, 10:40
Hi Graham,

I'll post the link to updates here as soon as any are possible, they'll also appear on our research web pages. Do feel free to contact our research team with any queries in the meantime for a direct response.

Best Regards,

Robyn

Graham
18th May 2012, 18:59
Hi Graham,
Do I read correctly that you feel you are getting better? If so how?

John

Hi John,

Yes. Lungs, lower legs, upper arms are strengthening and muscle mass is returning. I can sleep on my back, write again and I no longer have foot drop.

Best wishes

Graham

john
18th May 2012, 21:22
Graham,
That is fantastic. To what do you attribute these gains?

John

angnmick
18th May 2012, 22:44
Graham,
How are you getting better ? Is there a miracle cure in Bolton we can share ?
Ang

john
22nd May 2012, 08:04
Graham,


Do you have a problem telling how/ why you seem to be experiencing an improvement in your health?

John

pete
22nd May 2012, 11:57
I do hope you turn out to prove me wrong ?? Graham,

I for the life of me cannot understand why you do not back up your claims , considering how vocal you have been in the past concerning MNDAs . progress or lack of it

Graham
22nd May 2012, 19:13
Hi All,

For the past 2 years I have been blogging my progress on Build UK forum 'I am with you' thread, so I have kept no secrets.

I take no medication other than Zolpidem 5mg sleeping tablet, so it is my body that is fighting the disease. I sleep 13 hours solid every day and produce copious amounts of uric acid.

So it would be very pertinent if I and others took advantage of the gene tests and this latest stem cell test.

Think about it, converting skin cells to motor neuron cells creates diseased motor neuron cells. Our fate has been written in our DNA. That is not to say that is the whole story or there is no solution.

Best wishes

Graham

angnmick
22nd May 2012, 20:09
I am hopeful that it isn't Motor Neurone ALS that you have then as I am under the impression that you do not get better,isn't that why it is called a progressive degenerative disease. Fingers crossed that you actually have something else. xx Ang

Graham
22nd May 2012, 23:00
Hi Ang,

I and a host of neuros under Dr Ealing at the North West centre of excellence for MND at Hope hospital can assure you I have MND. I have documented all the classic symptoms.

It is a classic case of denial. You say I do not have MND, my neuros think I am super-optimistic! I say investigate.

Best wishes

Graham

angnmick
23rd May 2012, 12:18
Hi Graham

You Misquoted me, I said that I am Hopeful it isn't MND ALS, Dr Ealing certainly knows his stuff, but he will be the first to tell you he is always searching for answers and questioning what is in front of him. He has many sleepless nights I'm told.
I am not disputing your diagnosis just hopeful for you because it doesn't seem to be following the " normal " pattern of progression. Being super optimistic is great which we both are, unfortunately that isn't helping Micks progression from very active ex army guy/ Machine engineer to almost paraplegic. I am just glad that you are not following the " norm " xx Ang

Terry
5th January 2013, 17:05
Hi Graham;
Do you still take zolpidem, did it make much difference to the rate of progression. My brother has just came back from South Africa and a person seems to have used Stilnox and it improved his Mnd . Zolpidem is a very similar drug.
Regards Terry

Graham
6th January 2013, 15:13
Hi Terry,

Zolpidem triggers sleep, hospital environment perpetually triggers wake. What I considered restorative sleep hasn't happened for me for 6 months. I am always exhausted. I am missing the benefit of deep sleep.

Zolpidem can have dramatic effects on coma.

Btw, this IS a definitive test for MND, but not commercially realisable.

Take care

bakeit Forum