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Research for a cure?

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Unread 11-06-2012, 09:07 PM   #1
StephC
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Default Research for a cure?

I know there are limited clinical trials but my impression is they are all for treatment so i was wondering, is there research being done to find a cure?
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Unread 11-07-2012, 01:59 AM   #2
alice md
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How do you define cure?
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Unread 11-07-2012, 07:46 AM   #3
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Cure = not having to wake up with MG!

A colleague was telling me that she believes there is a cure for Parkinson's any day now.

I remembered overnight that there is the recently released john hopkins missile strategy tested on mice but i guess what i was really asking was is there hope for any of us on this forum that one day we might be able to get rid of MG,to have normal NMJ function and return to our lives as they were before mg?
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Unread 11-07-2012, 08:20 AM   #4
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Cure to me means that this whole MG thing is gone. I wouldn't need drugs. I wouldn't have to worry whether the steps were going to pose a hazard. I could see, breathe, sleep, think, walk, run, ride my horse, and just not worry.

Something like a long acting vaccine that would cause my body to produce antibodies to all forms of MG antibodies would be nice. Or a virus that alters my neuromuscular junction so that it works properly. Or a drug that you take for a week and then your life is back to normal.
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Unread 11-07-2012, 09:53 AM   #5
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I don't want to sound cynical.................but, "they" haven't found a "cure" for most cancers, diabetes, the COMMON cold, etc. MG is rather rare. I seriously doubt if "cure" is even on "their" radar.

Treatments are FAR more lucrative to pharmaceutical companies, IMHO. A cure would most likely only be given ONCE -- treatments just go on and on and on.
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Unread 11-07-2012, 09:54 AM   #6
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I personally think that recovery is more realistic and more important than cure.

Recovery=being able to lead a good and productive life with or without MG.

The constant search for cure ,leads to lack of treatment.

This is true not only for MG but for many other diseases and conditions.
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Unread 11-07-2012, 07:14 PM   #7
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I would be happy with minimal impact on my daily life. I would like my eyelid not to quiver, not to stumble, not to ever be hospitalized. I would like to be able to go dancing, to go for a swim in the ocean, and yes, I hate to say it, keep my house clean with only the imposition of having to take some pills. I would consider that a cure and be very happy.
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Unread 11-08-2012, 02:55 AM   #8
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I would like to be able to get out of bed the moment I wake up everyday.
I would like to be able to call someone from the other room and not need a buzzer.
I would like to be able to walk a reasonable distance on my own.
I would like to be able to pick up something heavier than a lightweight cup.
I would like to be able to hold a book and read it.
I would like to be able to climb steps on my own, and more than 3 with assistance.
I would like to be able to give a lecture without having to prepare it with minimal talking, and having to use my respirator before and or after.
I would like to be able to go to a picnic with my family and sit on the grass like everyone else and not in a wheelchair.

I would like to be able to fly like superman....

Over the years I met quite a few neurologists who wanted to "cure" me. Once they realized that their " magic cures" don't work for me (and sometimes even do the exact opposite of what they should) they lost interest or even worse.

For them " no cure, does not mean no treatment" didn't exist.

They did nothing to help me find the way to live with my gradually worsening disabilities. In fact, they did quite a lot to make it as hard as possible for me to live with them.

This was until I met my current neurologist. For him every minor improvement was meaningful. He looked at the circumstances of my life, and not at those of some theoretical patient. He understood that what is right for me may not work for other patients and vice versa.

He was interested in my recovery, not in the disappearance of my symptoms.

No doubt that cure is the ultimate goal, and it is great when it can be achieved, but more times than not, it is unrealistic.
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Unread 11-08-2012, 07:45 AM   #9
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It is a wonderful thing when you find that caring Neuro. I have had a good 6 weeks so when I saw my Neuro at my regular appt he was more excited than I was at my progress. Now that gives you a warm fuzzy.
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Unread 11-08-2012, 05:11 PM   #10
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There may not be a cure for cancer but for many but the most severe forms, there is treatment people get that does actually enable them to return to a "normal" life whereas as far as i can tell, but for one person on this forum who says he has been able to run recently, none of us with MG even with successful teatment have return to our "normal" life. There are a few who go into remission and the rest of us our best hope really is adapting to the limitations of MG and learning to live an adjusted normal
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