Living a Productive Life with MG:
 

By Dr Michal Haran

http://www.ipus.org.il/conferences/%...cular-disease/

(PS I am finally myasthenia free except when using antibiotics):hug:

A fascinating presentation by Michal Haran, MD. But I think the title is not very helpful.

Right, I sort of winced, too. For many of us, the point is remembering that our lives are valuable even if our "productiveness" plummets. But I haven't even listened to the presentation, so what do I know.

Anacrucis, I'm so happy to hear you're better!!! I'm better, too. I have had only very mild symptoms, and sometimes none, for 15 months now, and I'm off all drugs.

Abby

Thanks for sharing! **

Anacrusis, so good to read you're symptomfree most of the time!

I don't understand the title, it doesn't really come back in the presentation. I do however found strength in what she was saying.
I have had, and still have some times, doubt in my own symptoms. Because of the fluctuating muscle weakness, especially of the respiratory muscles. It helps to hear other's with the same disease have the same problems.

It's pretty much the same everywhere.
Diagnosis: "Your disease may be very severe now, but with treatment you'll be able to life a full life again, without many symptoms!" Oh joy I wish I had MG!
After years of many, many drugs, wheelchair, respiratory help, infusions and side effects you'll just have to live with even though there are too many times you can't handle it anymore, it's: yes, but your's is special, it doesn't fit the book, it's complex, it's different.
That's just wrong and may cause unnecessary issues which are easily avoided. I wish doc's would stop thinking MG is a peace of cake or a mild disease.

Anyway, like the presentation, very informative.

Oh I have no doubt that the title or that the share is quite imperfect as the nature of myasthenia and more often than not, life itself.

But there it is....an absolutely outstanding NM presentation & testimony that I would imagine is inspiring not only to those with rare neuromuscular diseases, to those with other types of diseases but indeed to anyone.

I guess there are times when you come across those who give inspiration to others for just a moment, those who give longer lasting inspiration and then there are those who give hope & inspire you for a lifetime and beyond. This must just have been one of those times.

This is the only thing I have worth sharing at the moment

Take very good care,:Wave-Hello:


Anacrusis

(PS I recognize many here! I think of you often! I am grateful for the time I spent here and will always be in so many very different ways :Good-Luck:- thank you)

Thank you for posting this video! It gave me hope, in that even a physician can have trouble getting a diagnosis and finding appropriate treatment for her myasthenia gravis. Still, she finally has found some treatments which are helping her, and it's good news. It shouldn't be this hard for people to get diagnosed. Hopefully things will get better with time, and treatments will improve as well.

Take care,
Erin

It is of course good news that Michal finally found some treatments that helped her. But, it is at the same time incredibly worrying that a trained medical professional, with a host of (trained medical) friends, struggled for so long to get answers. It doesn't hold out a lot of hope for those of us without medical training who are fighting the system alone.

One thing that was inspirational, and that I would like to have every Neuro read for several days, was "Rare, is rare, not impossible!"

Wishing you the best of luck Erinbear xxxx. I hope you never give up that hope!
(In my humble opinion, the pulmonologist´s report and your response to Mestinon should have been enough to get me looking for a new neuro - and especially so if present neuro wishes to withdraw a medication that is already working because he thinks you might have something else!!!)

Juliejayne – ´Rare is not impossible´ caught my full attention as well :)

If you are a doctor, like the one in the conference presentation who has been through repetitive diagnostic tumble dryers and travelled many impassable roads, similar to many MG patients themselves, who then continued to research high and low and present her findings at one of the first neuropulmonary conferences in the world, then I would think that holds an enormous amount of hope & promise for ordinary MG patients in the not too distant future. Who knows one might even argue it is lucky that she did have a rare form of MG, as that might just kickstart the vibration of the ear drums of selectively deaf neuros who so far have been having trouble believing in any form of MG existing at all....


Anacrusis