[hospital_pharmacist]

I'D WISH TO SCREAM.
YESTERDAY I HAD AN APPOINTMENT WITH ANOTHER NEUROLOGIST BELIEVING SHE WOULD LISTENT TO ME; I JUST LOST MY TIME AND MONEY.
I TOLD HER EVERY MY SYMPTOMS AND HOW MESTINON IS HELPING ME AND THE ANSWER AFTER READING THE HOSPITAL DISCHARGE LETTER WAS:
"I SEE YOU HAVE PSYCHIATRIC PROBLEM SO I RECOMMENDED YOU TO TAKE AN APPOINTMENT WITH A PSYCHIATRIST; IT'S VERY IMPROBABLE YOU SUFFER OF MYASTHEMIA AND YOUR IMPROVEMENTS ARE ONLY SUGGESTIONS'S RESULT"
I'M VERY ANGRY WITH THAT DOCTOR.
I REPLIED HER THAT IF IT WAS TRUE WHAT SHE THOUGHT ABOUT ME, I SURELLY DIDN'T WORK AS A CLINICAL PHARMACIST BECAUSE IF YOU WORK IN THIS FIELD YOU NEED TO BE psychiatrically HEALTHY!
CRISTINA

[Shari_W]

So sorry to hear that Cristina I haven't been around too much lately so I'm not familiar with your MG information. I take it that you are seronegative? I'm saying that because that's a typical response from a doctor for a seronegative MG'er. I'm seronegative but was fortunate enough to have a neurologist diagnose my MG due to my symptoms, EMG and Tensilon Test 18 years ago.

This disease is not in your head. You're not crazy although going through doctor appointments such as yours is enough to drive you crazy. Have you had an EMG, SFMG or any other tests? How many Neuro's have you seen?

All I can say is hang in there. Find another Neuro if you have to and keep plugging at it until you find someone who will give you the help you need and give you an accurate diagnosis.

I'll keep you in my prayers

[ginnie]

I don't understand why you were treated like that either. It seems to me that when physician cannot treat a person, or knows nothing about a condition they blame it on the mental condition of the patient. This doctor did not treat you correctly or fairly in my opinion. You are right also, your profession requires your mental ability. I would write a letter, to both the doctor and the AMA about treatment like this. You have every right to be angry. There is nothing worse, than going to a doctor for help, and no being heard. Waste of time, energy, money, and gas to get there. I am sorry this happened to you. ginnie

[alice md]

I of course can not know if you have myasthenia or not, over the internet.
But, a certain percent of patients with myasthenia have a normal EMG and no detectable antibodies.
Most modern physicians, unfortunately, trust results of tests more than they trust their clinical skills (some of them really don't have much clinical skills).
You have to keep on searching for a neurologist who treats patients and not results of tests. My current neurologist thinks that myasthenia should be diagnosed clinically and that you can have myasthenia with normal test results, but I have seen many leading experts who think that it is impossible. Changing their mind is like convincing that the earth is round to someone who knows it is flat. http://www.richardwebster.net/inourtime.html
Being angry and frustrated is not going to help you. It will only be the proof for those people of your mental instability.
The fact that you are a health care worker is not going to help you either. (it is a two-sides sword, because for those who believe that you are "faking" your illness intentionally or non-intentionally your knowledge makes you capable of " creating" very convincing symptoms).
Practically, I suggest that you try to find a support group of patients in your country, learn from them about neurologists (many times the more open-minded, caring and dedicated are not those that are famous. They are too busy taking care of their patients and not in public relations). Also, if you have physician friends you can trust, see who they recommend.
At the same time try to learn as much as you can about this illness so that you can find what works for you and makes you feel better.

Also, when a neurologist says that you have a psychiatric problem, it is like another physician saying- I am sorry, but I do not know what your illness is. Don't take it personally and don't doubt yourself and your mental health. This is how neurologists were trained to think since the time of Charcot and Freud.

My advice to you is that you use your limited time and energy to find what can help you, and not to fight windmills. I know how hard it is. I know that sometimes you just find it hard to believe that this can happen in the 21st century.

Originally Posted by hospital_pharmacist

I'D WISH TO SCREAM.
YESTERDAY I HAD AN APPOINTMENT WITH ANOTHER NEUROLOGIST BELIEVING SHE WOULD LISTENT TO ME; I JUST LOST MY TIME AND MONEY.
I TOLD HER EVERY MY SYMPTOMS AND HOW MESTINON IS HELPING ME AND THE ANSWER AFTER READING THE HOSPITAL DISCHARGE LETTER WAS:
"I SEE YOU HAVE PSYCHIATRIC PROBLEM SO I RECOMMENDED YOU TO TAKE AN APPOINTMENT WITH A PSYCHIATRIST; IT'S VERY IMPROBABLE YOU SUFFER OF MYASTHEMIA AND YOUR IMPROVEMENTS ARE ONLY SUGGESTIONS'S RESULT"
I'M VERY ANGRY WITH THAT DOCTOR.
I REPLIED HER THAT IF IT WAS TRUE WHAT SHE THOUGHT ABOUT ME, I SURELLY DIDN'T WORK AS A CLINICAL PHARMACIST BECAUSE IF YOU WORK IN THIS FIELD YOU NEED TO BE psychiatrically HEALTHY!
CRISTINA

[Brennan068]

I'd like to second everything Alice has said.

Sending you happy thoughts and hoping you don't waste your energy on people or things you cannot change.

[hospital_pharmacist]

I always kept in mind that getting hungry in front of doc would confirm their hypothesis about psychiatric illness; the fact is that I usually talk gently with everyone but even the person most patient loses the patience at the end.
I wrote an hard post I know but it was the voice of desolation.
I know that being an healthcare worker put me in a critical side because the docs can think i know enough informations about MG to cheat the same docs telling them symptoms i don't really suffer of.
But what would I earn by this behaviour? I would only harm myself.
The fact that i'm an healthcare worker and that I always work well without damaging the patients is a clear proof I'm mentally healthy.
I will keep looking for a doc who wants to comprehend me and give me an help especially monitoring frequently my blood so that to prevent any kind of damage due to the meds i'm taking.
Thank for suggesting to look for a support group here in Italy but it's not simple; I learnt along the years that Italy is far away from USA even in this field.
However i will try.
Thanks again to everyone
Cristina

[ginnie]

I hope you will find another physician who will listen to you. Most people do not fake a problem. After all, life is hard enough without adding to the mix. You can find someone who will address your issues. don't be apologetic for voicing your despair, it is OK, as we all loose patience when we are pushed into a corner. There are more compassionate doctors around that will listen and try to diagnose and treat you. I compain too at times, and I understand your feelings about being pushed away, and being told you have a mental issue. Let them live with these conditions of of ours, and have them be told it is all in their heads. I do wish you all the best. ginnie

[alice md]

Don't think I am not being sympathetic.
I have been through quite a lot myself. It took me 6 years and quite a few neurologists to reach the one I have now.
And it is not that I have fully put behind what I have been through.
It has left some scars which I hope are gradually healing.
It's just that I have learned from my own experience and mistakes.

It is so hard to be faced with disbelief by those who are your co-workers and colleagues. It's not something you expect to happen.
It is hard to understand that it is not disbelief, but their concepts and ordered world which are challenged by your illness.

Originally Posted by hospital_pharmacist

I always kept in mind that getting hungry in front of doc would confirm their hypothesis about psychiatric illness; the fact is that I usually talk gently with everyone but even the person most patient loses the patience at the end.
I wrote an hard post I know but it was the voice of desolation.
I know that being an healthcare worker put me in a critical side because the docs can think i know enough informations about MG to cheat the same docs telling them symptoms i don't really suffer of.
But what would I earn by this behaviour? I would only harm myself.
The fact that i'm an healthcare worker and that I always work well without damaging the patients is a clear proof I'm mentally healthy.
I will keep looking for a doc who wants to comprehend me and give me an help especially monitoring frequently my blood so that to prevent any kind of damage due to the meds i'm taking.
Thank for suggesting to look for a support group here in Italy but it's not simple; I learnt along the years that Italy is far away from USA even in this field.
However i will try.
Thanks again to everyone
Cristina

[Anacrusis]

Originally Posted by ginnie

Most people do not fake a problem. After all, life is hard enough without adding to the mix. You can find someone who will address your issues. Let them live with these conditions of of ours, and have them be told it is all in their heads. ginnie

That is SO well said, Ginnie!!!

Cristina I also live in Europe......

Good grief! I hope it is going to be your´turn´soooooon

One of the last things I said to a doctor in my country was......

´I would like you to give me that test that proves that these fluctuating, fatigable and progressive muscle weakness symptoms are actually of psychosomatic origin´

I do know of an excellent MG researcher and neurophysiologist that lives in Europe that does consultations......

Anacrusis