what I was trying to say, is that you need proper treatment.

even if you have some type of progressive neuromuscular disease, there is supportive treatment that you can probably recieve.

maybe you will have an excellent response to mestinon.

sometimes if you try to be nice and not bother your physician too much, you end up being seen as doing much better then you really are.

I have learned that the hard way.

you are right that I don't know the system in australia, but I have heard similar stories in places where I know the system very well.

I really want to see a physician any where in the world tell a patient with chest pain and signs of cardiac ischemia on a stress test, that he can go home, and come back to the ER only if he has an acute myocardial infarction and is on the verge of dying.

but I can tell you that a very prestigious neurologist had no problem ignoring a letter written by a pulmonologist stating that the patient has rec. acute respiratory failure, and needs in his oppinion emergent plasmapharesis.

I have the letter right here in front of me- dated dec. 18 2007.

dg: rec. acute resp. failure, neuromuscular disease of unkonwn etiology.

over the last few weeks there have been multiple episodes of severe respiratory compromise, accompnied by extreme generalized weakness.

in my oppinion she requires emergent plasmapharesis, and I recomend that she takes a leave of abscence from her work meanwhile.

will follow MIP/MEP at home. needs emergent sleep study and possibly NIV.



and this in an excerpt from the letter I recieved from that neurologist, after I told him that I want to find someone else in the world that may be able to help, if he has decided to give up on me.

this 46 year old physician was followed by me for the last 3 years due to rec. episodes of weakness and shortness of breath. one time she was admited to the ICU of her own hospital because of an episode of severe breathing difficulties... all her studies were completely normal . her neurological examination was always normal. SFEMG was repeatedly normal...despite treatment with plasmapharesis, steroids, IVIG, she continued to have episodes of generalized weakness, shortness of breath and ptosis. .. I thought that a psychological component was involved and referred her to hypnosis therapy. ... she came to see me after a year, because of increased generalized weakness and shortness of breath. respiratory function studies in her hospital showed worsening of her respiratory muscle strength. neurological examination was completely normal.

it took me six months and mutiple e-mails that we sent to neruologists around the world to find someone that was ready to see me for consultation. most, after reading this letter understood quite clearly what my illness is, and didn't even want to bother dealing with me, after recieving this letter.

and you are wrong if you think that this person was eventually much different.

he told me forinstance that I feel the steroids are making my illness much worse, but he knows that this is impossible, and I am actually much better, almost in complete remission. as a SFEMG done at a time of severe generalized weakness and respiratory difficulties was completely normal.

and those episodes of severe generalized weakness and respiratory difficulties that require respiratory support are due to "emotional problems".

he also made sure that another neurologist I consulted, by his advice, will fully understand what he thinks. and write to me that I am in the best of hands under his care, and that he has nothing more to offer.

and I am just giving you a very small glimpse of what I have been through over the last 4 years.

but we have no choice. we are ill. the people that diagnose and take care of this illness are neurologists.

in order to recieve something that resembles reasonable management. I have had to consult 10 neuorlogist and the same number of pulmonologists.

I could have stopped many times along the way, and have the fate that you describe of you aunt.

but I didn't. and am not going to.

I knew very well that it is either fighting what seemed at times an impossible war against wind mills and dragons at the same time, or ending up in a nursing home, fully dependent on others.


although I did promiise myself that no one is ever going to humiliate me or endager my life again, due to this illness, after the last time I was offered antidepressants for my worsening respiratory symptoms.

and I have so far been able to keep this promise to myself.

alice