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Arthur
20th February 2011, 11:29
PEOPLE WHO HAVE BEEN CURED?


OK Folks, This is going to be a challenging area of investigation.


We hear of patients with many diseases (last year a Bristol women with certified breast cancer suddenly was declared clear - why/how no one knows ?) , to this extent I want to investigate cases of MND patients who have been advised that they do not now have MND.

No doubt the immediate reaction is to state that it was a 'mis-diagnosis' this is the easiest way of resolving this but what if was not and the person did recover?

The medical fraternity will concentrate on people suffering, so someone who recovers 'miraculously' cannot be dealt with in the normal way nor is investigated.

I have Bulbar and questioning all the way! As already stated I recovered from two serious knee problems without surgery etc so I have had first hand knowledge of illogical recoveries.


Where do we go from here?
I need to collate cases where people have recovered and no doubt 'disappeared' from the MND scene.

Do you know of anyone?

Can you contact them and ask permission for me to contact them?

Please comment on the forum (negative or positive) but email any personal details - these will be kept confidential (DP ACT 1996)

I will tie this in with MNDA if requested.

All the best

Arthur

computatec
20th February 2011, 15:03
Hi Arthur

I think this is a very good idea and the results will be interesting. It will not be easy to sort the wheat from the chaff, but I am sure it can be done. My hope is that there are some folk out there who were properly diagnosed with the disease and are now cured, in remission or the disease has been halted. I suggest you give some thought to the evidence required to establish that a patient was properly diagnosed as having the disease before claiming to be cured.

I have heard some horror stories of how patients used to be diagnosed and informed that they had the disease, but nowadays there seems to be a standard protocol followed by all clinicians that ensures there is not much chance of an errror in diagnosis.

Clive

Arthur
20th February 2011, 15:43
Hi Clive, Thanks for feedback, I am going to ask my Neuro Consultant on Tuesday if he will assist in my research - see what happens. Arthur

Graham
20th February 2011, 23:28
Hi Arthur,

I believe I am a case of 'Work In Progress'. I have blogged my progression and remission to date in 'I am with you' on build.

Best wishes

Graham

Robyn Copley-Hirst
21st February 2011, 11:11
Hi All,

As you probably have guessed I am obligated to say for the benefit of people new to looking into MND:

There has not been any proven case of anyone who has MND recovering and being free from the disease as yet.


That aside, Arthur, you did remind me of a story I read recently about a misdiagnosis.

It's a news article about a man called Terry Bott, you reminded me of it when mentioned mis-diagnosis as the most obvious answer...in this case it was. But it's a great story and great bit of luck for the man concerned who thankfully had a condition which could be treated with steroids.

Why A Man Was Happy To Be Misdiagnosed With MND (http://www.dailymail.co.uk/health/article-104789/Why-man-happy-misdiagnosed-br-motor-neurone-disease.html)

Graham
21st February 2011, 20:03
Hi All

"There has not been any proven case of anyone who has MND recovering".

Wrong.

This thread is about exposing cases where people have experienced remission. Four cases so far have been brought to light on this forum.

Please do not censor this response. I look forward to discussing this topic.

Best wishes

Graham

eshep
21st February 2011, 20:32
Dear Graham,

I must reiterate my colleagues statement and the official stance of the Association, that there has not been any proven case of anyone who has MND recovering and being free from the disease as yet.

On the forum we welcome all positive posts and encourage people living with or affected by MND to share their positive experiences.

Emily

Robyn Copley-Hirst
22nd February 2011, 12:25
Hi All

"There has not been any proven case of anyone who has MND recovering".

Wrong.

This thread is about exposing cases where people have experienced remission. Four cases so far have been brought to light on this forum.

Please do not censor this response. I look forward to discussing this topic.

Best wishes

Graham

Graham,

These cases which have been discussed within the forum have not yet been scientifically proven. We cannot say they have been scientifically proven, merely that there has been some anecdotal experience stated online.

I agree with you that this may not always be the case, and at some point in the future, scientists may be able to declare that without a doubt, there have been people 'cured' from MND. But this is not the case so far.

As I stated, as a representative of the MND Association, all our mods are obligated to state this as a duty to other newer members to the forum who may actually believe there has been someone scientifically proven to be cured.

I look forward to seeing how this discussion pans out too, there are certainly some interesting points of view and cases to discuss.

Best Regards to all,

Robyn

Graham
22nd February 2011, 19:19
Hi Robyn,

Thanks for your comment which is interesting. Arthur met with his consultant today and if the consultant was willing to investigate, I would send my details to Arthur.

As I have blogged, when I last visited my consultants, I have had the following comments:
"No, the condition is fluctuating"
"You have an inter current condition"
"You need to see a psychologist"
From 3 different consultants.

Tests have shown my lungs are strengthening and I can see many muscles have recovered from atrophy.

There are many strands of research ongoing, yet none as I can see into why people survive 5 years plus.

Best wishes

Graham

Luna73
22nd February 2011, 22:36
Graham, as an ordinary forum member I would also urge you to exercise restraint when talking about 'recovery' from MND - you really may be giving people false hope and it's not fair to people newly diagnosed. There are no proven cases, just isolated experiences. I remember my father being on a trial for amino acids 20 years ago, and I cannot tell you how excited he was when he went from shuffling along to practically striding up and down the hospital corridor. Needless to say this didn't last - just the amazing power of mind over body when you want to believe in something so much. I'm not questioning your remission and certainly am not suggesting it is in the mind only, but as you yourself will know, this is extremely rare.

Best wishes
Rachel

Graham
22nd February 2011, 23:12
Hi Rachel,

It is difficult, I know. I have my diagnosis and Arthur is looking for people who are recovering to come forward. Is it best that people keep it to themselves?

Best wishes

Graham

G60dubber
23rd February 2011, 14:53
I think Luna has rasied a very pertinent point. Where the mind goes the body will follow, I don't suspect that I'm the only one who, when feeling a bit fed up, finds that they feel/are more restricted mobility wise. On a day when you're feeling good you seem able to move that bit better, walk that bit further etc.

The mindset is incredibly powerful, I'm not advocating it will cure mnd, however if you feel negative your body tends to react that way.The mind can limit your potential, a brief example if I may....
I used to train people in the gym, and say for example they were bench pressing 100kg for 10 reps, they believed that was the max they could do. When setting up the set, I would tell them they are doing the same weight for the same reps, then slip another couple of kgs on either side. Did they do less reps as it felt heavier?, no they still did 10 reps as it was their mind that was limiting their capability. Next set they believed they could do it so they did even though they hadn't got stronger in the space of 2 minutes :-).
Just my two'penneth...

computatec
23rd February 2011, 18:06
Hi Graham,

It is probable that as part of your diagnosis you would have had and EMG and nerve conduction tests. Your medical notes will contain the graphs and results from these tests. If I was in your position, believing my condition was improving, I would ask my neurologist to order a repeat of those tests so the results could be compared with those recorded earlier to provide proof of any improvement. At present an EMG is the only test capable of showing any measurable improvement in your muscles. Have you asked your neuro if blood tests have been done to exclude Polio? You must forgive our sceptism, which is rooted in the fact that no cure has yet been proven, but my mind is not closed to the possibility. We all want your improvements to be the real deal and follow your progress with great interest.

Clive

Graham
23rd February 2011, 19:24
Hi Clive,

I have had a full range of medical examinations including 3 EMGs, 4 MRI, 2 LP, Oxymetry, 1 CRT, 2 SNIP etc etc

The facts are I can now stand on my heels, I have control of my bladder and bowels, finding it easier to climb the stairs etc etc

If Arthur's consultant wants the details, all I am saying is he may have them.

Robyn, I have deleted your private message as promised.

Best wishes

Graham

Arthur
23rd February 2011, 21:10
Hi Folks,

Sorry for delay but had a last minute appointment at breathing clinic.

Firstly my apologise for the emotive views and responses it has generated, this is understandable for to say there is a cure without proof is not fair to all but equally so, to say there is no cure I feel is also not fair and takes away hope. We don't know what is really going on or how to cure it but lets not close our minds to the fact that eventually there will be a solution and have we missed it - hence my submitting the topic.

To this extent I am pursuing diverse approaches and treatment and currently investigating Stem Cell treatment - yes i know there are views it is all a con but equally there appears to be cases which unless they are a blatant lie there have been stated successes - I intend investigating and contacting the specific patients (not easy!)

CONSULTANT MEETING
I had my meeting with my Neuro Consultant and asked specifically whether there were any cases where patients had been diagnosed with MND and had made a recovery. The answer was that although there have been cases of patients not advancing their symptoms there were no known cases of recovery. Whilst they would be interested in any findings they could not contribute any facts in relation to this particular research.

I will continue to seek out possible cases worldwide and come back if and when a proved case is identified.

All the best

Arthur

My driving force is Hamlet - To be or not to be....

Robyn Copley-Hirst
24th February 2011, 03:23
Robyn, I have deleted your private message as promised.

Best wishes

Graham

lol, you may keep or not keep whatever messages from myself Graham, whichever makes you happiest :) I don't remember that... but then it is late and time for a horlicks!

I'm pleased to read that you're doing so well, Graham, it's really nice for everyone to hear.

Best Regards,

Robyn

Jacqui Priestley
25th February 2011, 17:22
I think the issue of hope vs false hope warrants further consideration. To live with no hope is incredibly difficult, nay impossible for me, so if given the choice between False hope or no hope, I'd rather swallow the false hope pill - at least then I live each day a little happier & with more enthusiasm. Of course false hope is dangerous if it means that you put off what you really should be doing now, waiting for that elusive cure.

I guess what I'm trying to say is that the importance of training the mind to live with the reality of a terminal disease at a time of great excitement in MND research is not given sufficient thought by the medical profession. MND patients in the UK live continually with the reality of a progressive disease with little treatment whilst Biotech companies overseas trial potentially beneficial drugs which we cannot access. The pain of this is almost unbearable. What can we do to increase access to trial drugs?? How do others keep themselves sane??

G60dubber
25th February 2011, 19:44
Biotech companies overseas trial potentially beneficial drugs which we cannot access. The pain of this is almost unbearable. What can we do to increase access to trial drugs?? How do others keep themselves sane??

Excellent point which many will agree with I'm sure. I have a big frustration in that you get told you have ALS, then here's some Rilutek which may or may not extend your life by 10%, now go away because there's nothing else to try because it's not clinically proven.... grrrr. I'd eat the damn zebra fish raw if I thought it would help :-)

Graham
25th February 2011, 20:03
Hi Jacqui,

You have wrote well and I share your thoughts.

After 25 years of squash, 15 years playing for Lancs, National O45 QF in 2007, coaching kids, two of which reached junior Eng no. 1, I became very familiar with the workings of the body's muscles. Muscle cramps, when they started a year into MND, became my thread of hope. This for me was a sign that muscles were recovering. I have endured the pain and two years later I have seen improvements. I have read your postings and seen you have started with cramps. My recommendation is to stretch and work any muscle that cramps and not to medicate it. Challenging, I know.

Best wishes

Graham

soniamm
27th February 2011, 16:22
I agree with Jacqui that living without hope would be unbearable, my son is currently very low and is heading towards a depressive state, with the birth of his own son last week ,it has launched him into a pit of almost despair after feeling euphoric at the time of the birth ... he will come through this, those of us that are aware of his condition in the family, will rally around him .

The power of the mind is awesome but this sometimes needs a boost of some sort, hope in this case, albiet a snippet can offer a surge of belief. We all have to believe in something even when the odds are stacked against us, one day soon..... who knows? my point!!

We collected stem cells from the birth, it was an expensive excercise, I know that at the moment stem cell research is not very positive with regard to MND, but we could not pass up the opportunity, again, who knows, I believe along with other posts that we are probably staring the answer in the face.

Sonia

computatec
27th February 2011, 20:20
Yes we realy do have to have hope, even faith, that the answer is out there and will soon be uncovered.

I found this on the ALS America site:

"It is important to remember that ALS is a quite variable disease; no two people will have the same journey or experiences.* There are medically documented cases of people in whom ALS ‘burns out,’ stops progressing or progresses at a very slow rate."

Pasted from http://www.alsa.org/about-als/what-is-als.htm

Clive

Jam
22nd November 2012, 10:20
Hi
Please Check out This article online

( Turning Off Mutant TDP-43 Stops ALS in an Animal Model )

Thanks

Graham
22nd November 2012, 21:40
Hi Jam,

GREAT news!

Cheered me up on a difficult day. :)

Will add to my compilation, "Why neurons lose their spark"

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