Hi,
I appreciated all your answers to my messages; you are wonderful persons and i knew i could find real support here.
The fact is that MG especially seronegative MG is a difficult to diagnose illness because all the exams are usually negative and so very often this causes frustation in the patients. This happened to me.
I'm so angry, frustated and i'm going to be desperated because of this condition; this is why i need all you support now.
Moreover I have to say that during this last two days i had a very bad news from workplace: you have to know that since the beginning of my job in a health care service as an hospital pharmacist, the director of this service treteated me very badly (i think it's mobbing because this behaviour involves other colleagues too). After only three days by employment he told me i should have discharged myself and if not he would have involved the disciplinary Committee.
I didn't discharged myself because i didn't do anything wrong in the workplace and so the director kept the promise. At the end he opened two proceedings: one personal ended up with a written complaint and the other through disciplinary Committee ended up with job suspension until the end of my job contract (almost three months).
Every evidences gathered by disciplinary Committee are false; they builded up written evidences by modifyng public data (it's a crime) to make me see like a negligent and incompetent pharmacist who put at risk life of patients (director told me once regarding a med "Are you crazy? you could kill a person")
so finally I'm unemployed after all other sufferences I had in my life: since childhood and until 2010 i underwent sexual , psychological (this violence with control is endless) and physical abuses and violences by my family more one rape by a stranger in 2003. I suffer of other many medical conditions too.
I'm tired of Italy and of this corrupted system that doesnt' recognize value of the persons like me that can critize a decision of the chief but only to improve the service, that tried to improve workplace though intuition and suggesting changes (by the way all my suggestions at workplace since my employment have been accepted by director who stealed my ideas by showing like they were his). I decided to move from Italy and work there in USA; i know there are exams i need to pass to make my degree valid there too but study doesnt scare me especially if after all i will conquer a job that will give me satisfaction.
Dear Annie I answer now to all your questions.
You asked me if the doctors made me see a neuro-ophthalmologist? really no they only made me do two eyes exams; one regarding diplopia that confirm I'm affected by diplopia and when i asked to technician (there wasn't a doctor) if it could be related to eyes weakness she replied that it could be.
I really don't know if I suffer of ptosis but it's clear that my eyes tired easily and then i fell them heavy so that i can't read or watch TV; the only thing i can do in these moments is closing them for a while.
They didn't make me see a pulmonologist: really they asked me if i had breathing problems more than once but i don't feel to have them maybe it's only my sensation.
So maybe they didn't ask a pulmonologist consult because of this.
The fact is that i had a bad pneumonia two years ago just when i began to feel so weak the legs to fall down on the ground. It's probably it was an aspiration pneumona a common complication of MG and this left an injury in my lung.
My blood oxygen really is lower than i usually had: about 94% and i had 98%. they measured this every day in the last week of my hospitalization. they didn't give me Mestinon even if i suggested them i could have a seronegative MG and they didn't give me the Tensilon Test.
Really they didn't have the will to understand what i suffer of.
Heat is not good of me i could see it because when i took a shower the heating bath makes me always feeling very bad like im going to fall down on the floor.
Regarding meds i'm taking the minimal dose of Mestinon 60 mg two tablets a day even if they aren't enough because i felt always bad after 8 hours since i took the med; i don't want to take more tablets until the neurologist appointment i took for 11 june.
I'm going on taking azathioprine but no one made me the test about that enzyme because I chose by myself to take the therapy with Mestinon azathioprine and prednisone like i wrote before: however i took only one tablet of prednisone 3 times a week because i know it can be dangerous for me because i suffer of osteoporosis and insulin resistance too . I took prednisone even in the past two years ago when the rheumatologist prescribed me this because of joints pain (i suffer of them by the age of 14 years). However, even if at that time i took 25mg of prednisone, i had still leg weakness and i had crisis when i felt falling down on the ground.
I suffer of weakness and pain too and i discovered that some of that pain is due to weakness because after a sleep the pain is less intense.
the doctors made me do two kind of EMG but the results were both negative; however i read in a scientific article that in the sufferers of seronegative NG is common to have negative EMG at rest. The doctors should do a EMG exam after a physical effort in this patients type to see abnormalities.
By the way itried to contact while i was in hospital by mail a doctor specialist in myastemia (name suggested by another patient who suffer of seronegative MG too and who had been diagnosticated with this illness by this doctor only on a symptoms basis). Even if my symptoms are clear, she told me i suffer probably of fibromyalgia and chronic fatigue syndrome and even if i asked her an appointment she refused to meet me.
that's all
Cristina