One of the problems with saying that MG is not so bad, is that this is the impression given to others.
If those who suffer from MG think it is not too bad, than obviously it isn't.
So, why should we invest in finding better treatments for it, why should we try to do what we can to improve patient's lives?
If neurologists have the impression that this is a "nice" disease and their patients agree with it, then all is well.
And if you specifically, don't feel that way about MG, then something is wrong with you.
Let's all live in this "heaven of fools" convince ourselves that this illness is really fun and nice to have. Say thank you every day that we don't have something worse. Receive lousy treatment, fight for what patients with other disease can easily get. Accept the fact that our respiratory symptoms will be properly recognized and managed at the most half of the time (if we are lucky). And most importantly always be "positive" about it all.
Go to
http://clinicaltrials.gov/ct2/result...avis&recr=Open where every clinical study in the world is registered and look at how many on-going clinical trials for MG there are- 14!
now look at chronic lymphoctyic leukemia
http://clinicaltrials.gov/ct2/result...emia&recr=Open and you will see that there are 438 on-going trials.
why is that? because chronic lymphocytic leukemia is a serious illness, which affects mostly patients over the age of 60, some of who have a very indolent course that can take years. But, their physicians want to find better treatments so that all will be cured or at least achieve a long remission. I myself have spent over 10 years working in the lab, trying to gain a better understanding of this illness and developing better treatment approaches.
On the other hand, myasthenia is a nice illness, that affects mostly young people, disrupting their personal lives and careers. But, they all lead a normal life. Some of them end up spending long periods in the ICU, requiring respiratory support, some of them are wheel-chair bound. But, it is obviously their fault, because as we all know this is not a serious illness and not one that you can actually die from.
I think it is time to say the truth and start fighting for the treatment and support that we require. We may not have ALS, but we may have times in which our condition is like that of a patient with end-stage ALS. and then we recover (at least partially) and have to readjust to our " normal" life again, until the next time (which is quite unpredictable) in which we will find ourselves bed-bound again. Having to postpone important meetings, and appearing unreliable.
MG is a horrible illness. Yes, you can live with it. Yes, you can adjust to it. Yes, you can still lead a productive life with it. Yes, you can have many times of joy and happiness. Yes, you can still have significant achievements. But, you can also do so with cancer and even with ALS (see Steven Hawking).
with much more support from your physicians and the society.
Some patients will have complete remission, but so will some patients with cancer.
Many types of cancer, which had no effective treatment in the past, are now curable. Even patients who do not respond to initial treatment can have second or third line treatment to which they will respond. The amount of research in cancer is enormous. Patients with cancer have realistic hope that new treatments will be found in their life-time.
This is not so for MG. There are very limited treatment options. And if you don't respond to them, you can only receive symptomatic treatment and supportive care.
Those are the answers I received ( a few years ago) from a leading expert who was involved in my care, when I started to realize that I have severe refractory MG that doesn't respond to currently used treatments:
Quote:
Question: You think that my illness is fairly severe autoimmune MuSK positive
>myasthenia, and there is no need to try and look for other possible
>diagnoses any further.
Answer: We have evidence of MuSK myasthenia and I don't think we need to look for an alternative physical explanation for your symptoms. I generally don't use phrases/words like "fairly severe" - as what is mild to one person may be severe to another!!
Question: And possibly in the future there will be some better management option that
>we could try.
Answer: And you might win the lottery!!!! Of course, we always hope.
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So, the severity of MG is not objective (like the severity of chronic lymphoctyic leukemia), but depends on how the patient sees it. And obviously there is something wrong with a patient that sees his/her illness as severe.
And when a patient (who is also a physician who has seen the enormous progress in her field of practice) dares to hope for the development of better treatments she is ridiculed for that.