View Single Post
Old 11-26-2010, 04:42 AM
alice md's Avatar
alice md alice md is offline
Member
 
Join Date: Sep 2009
Posts: 884
10 yr Member
alice md alice md is offline
Member
alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
10 yr Member
Default A word of caution

no doubt that we are what we eat, and that nutrition and enviromental factors are under appreciated as causing diseases.

no doubt that there is an association between celiac diseaese and myasthenia (eg-the prevalence of people that have both is much more then would be expected by chance),

and no doubt that celiac disease can have unusual presentations (including neurological symptoms with very minimal gastrointestinal symptoms), as can myasthenia.

no doubt that both disease are underdiagnosed because many patients do not fit the "box"'.

no doubt that allergic reactions can lead to worsening of autoimmune diseases (myasthenia included), and better control of the allergic condition can also bring better control of the autoimmune disease.

yet, one has to be careful and not create a new "box", which may lead to serious errors.

what I mean by that is that not all people with myasthenia have celiac as well not all people with myasthenia have allergic reactions. and some do need proper medications (with all their inevitable side-effects) in order to control their illness.

myasthenia is a serious condition, with a significant morbidity and mortality if not adequetly treated. it could be reasonable for someone with relatively mild symptoms, to experiment for a while, but for some it could lead to serious consequences.

telling people that instead of taking medications with all the side effects, they could just use some form of diet or life-style change, can be dangerous, as you never know who is going to read this.

there was a very sad story of a young woman who had a liver transplant and did expetionally well, but after a year she got tired of taking the large doses of immunsupressants required. she came across a story of a patient who stopped taking all medications and did very well. but, she decided to do it on her own, and very soon after she was admitted with severe liver failure due to acute rejection, and died.
http://www.nytimes.com/2008/10/10/health/10chen.html

I am telling you this, because I am sure you mean well, and trying to help people, but it seems that in your case, you had undiagosed celiac disease, which caused some or most of the myasthenic symptoms. taking a similar approach by someone who does not have the same problem can be hazardous.

in a way your illness was not properly diagnosed and the treatment you were offered was not the correct one. just like my illness was missdiagonsed and the treatment I was offered was not the correct one. but, this does not mean that this is the case in all patients. patient care should be individualized, and ideally based on a good physician-patient relationship, in which all options are discussed, and the best one is eventually chosen. combining the patient's understanding of his/her illness with the knowledge base and experience of the physician.

you and I want to help others understand the mistakes that were done in our management, so they will have a better outcome, but at the same time we do not know who is going to read it, and what his/her interpertation is going to be.
alice md is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
craftyRCC (11-26-2010), roguepuppet (11-26-2010), suev (11-26-2010), TRESA (11-27-2010)