Hi Jessica,

I am sorry to hear about your lack of response to the medications you are receiving, and hope they eventually find something that works better for you. sometimes it requires a lot of trial and error, as well as a lot of patience on both sides. There are patients who have been very ill for quite a few years, and had significant improvement once the right "mix" for them was found.

As to your SSDI:


1. it will not be of any use to send this guy back to med. school. this is what they learn there. MG is a very easy to diagnose and treat disease, and most people lead a normal life, despite their illness.

2. most people doesn't (unfortunately for us) mean all people.

3. psychology (like almost anything else) can be used or abused. making a psychological diagnosis over the phone, without even seeing , talking to the person, or knowing zilch about them and their life is in my opinion-abuse, and can be much more psychologically damaging then the illness itself.

4. telling a person that is not responding the "miracles" of modern medicine, that this is due to "emotional problems" is unfair and double jeopardy.

5.physicians who use psychological diagnosis in this way, do it to cover their ignorance, arrogance and lack of true care. And they should best be ignored. (unfortunately the judge does not have enough medical knowledge to understand that).

6. without realizing it, this guy is contradicting himself. on the one hand he is saying that MG is an easy to treat disease with an excellent prognosis, and on the other hand he is saying that it is a "scary diagnosis". how does this go together?

7. I think that (like most or even all of us) you do need emotional support. your life sounds like a daily struggle. But, only you can decide if, when, how and with whom to get it. many times the emotional support you can get from other patients (dealing with similar problems) , from your physicians (if they are truly knowledgeable, experienced, caring and understanding), family and friends (that know who you are and what your are struggling with) is much more then you can get from a formal therapist, who knows very little about you or your illness. But this is personal, and I know some do find it helpful when dealing with life's hardships. (it probably depends on who he/she is, more then what his/her formal education is).

8. Having an emotional response to an illness is completely normal. In fact it is proof that you are not mentally retarded or totally detached from the reality of your life.


The sad truth is that most people (including physicians and even quite a few neurologists) don't understand this illness and don't know what it means to live with it. Let's hope that this will gradually change, but for now we just have to accept this reality, find those that do understand , try to educate those that don't (as much as we can) to help ourselves and future patients from having to deal with this kind of crap.