Hi! I have myasthenia gravis and do wish to help you, if I can. Please come on over to the MG forum here so that more people can help you!

http://neurotalk.psychcentral.com/forumdisplay.php?f=77

I am so sorry you were treated so badly. It is so obvious that you have a serious medical condition and NOT a psychiatric one.

I think you need to not only have care but proof of MG.

Have you been to see a neuro-ophthalmologist? They can assess the muscles around your eyes and tell you if they "fatigue" and get weak, causing ptosis (toe-sis).

Have you seen a pulmonologist? They can do basic breathing tests. Ones they should do that are specific to MG are MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). They show how well you are doing breathing in and out.

You should have had your oxygen tested for with an O2 Monitor, had arterial blood gases done, had breathing tests and been given oxygen. They could have diagnosed you with a Tensilon Test - though it's a little dangerous when someone with MG is that bad off. They could've simply given you a small dose of Mestinon to see if you got better! They DID NOT do anything logical or useful for you.

It sounds to me like you were in an MG crisis. The way you were treated was horrific. You can DIE from an MG crisis when not given the appropriate medications, as you obviously know.

Overmedicating with MG is not good either. Too much immunosuppression is not necessarily good. Prednisone is very hard to get off of. Are you still on it and Azathioprine (Imuran)? Did someone test you for the TPMT enzyme BEFORE you took it? The drug can build up in your system if you don't have that enzyme.

How much Mestinon are you taking?

I can't believe they gave you a pain med. Did you have pain too or just weakness? Gabapentin/Neurontin can actually cause MG, so stay away from that one!

Are there any good neurologists who specialize in MG there? If so, please find one. You need to probably have a Single Fiber EMG test done. And you obviously need some serious ongoing care in case you get worse again!

You need to stay out of the heat. Heat makes MG so much worse. And don't overdo things!

Please let us know if there's any more we can do to help. Come on over to the MG forum and we can, at the very least, support you while you are going through this.

Again, I'm so sorry you've had to go through this. Believe me, I do know what it's like! Take care.

Annie

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

Hello, nice to meet you. I have multiple sclerosis and it took YEARS to get a diagnosis. till then I was treated as if I was whining and simply looking for a way to get out of work. I was dismissed, treated rudely, and told I needed "more busy work" to keep my mind from thinking up new symptoms. Turns out a few years later the lesions started appearing on my MRI and the big boy hospital said "you have MS!, you are not faking this." What a huge relief!

Best advice is to keep seeking a doctor till you find one that listens to you. To be labeled as Munchhausen without a proper work up, or a proper way to be followed was just cruel! Even if you have this disease, you would need sympathy, empathy, treatment and the respect and caring of the medical field. not to be treated as if you were just looking to pull one over on everyone.

Hang in there.

Hi,
so you know very well what i'm going through. Don't worry I won't give up neither with job dismissal too; i will report the facts happened in the hospital and if necessary i will write to journal too. This with job dismissal too; i yet contacted an advocate because of this.
I yet contacted a neurologist for an appointment on 11 june and if i won't be satisfied by him i will look for another.
Meanwhile my project to move to USA will go on I won't give up this too because I think this is a better country than Italy with more democracy, law respect and meritocracy. Since i began to work i had only problems with persons who didn't have respect for me and for laws (for example there were persons who falsified my sign on prescription, a serious crime)
It's years i don't feel italian anymore because my values justice first of all aren't the values of this country
Cristina

Best advice is to keep seeking a doctor till you find one that listens to you. To be labeled as Munchhausen without a proper work up


I agree with everyone......

To the doctor who isn´t able to stay neutral during the diagnostic process I say:

´I´m about as likely to accept a psychosomatic diagnosis from you as you would accept a diagnosis for cancer from another doctor without any positive blood tests!!!
So come on then....give me the darned Munchausen test, where is it then?!!!!......

Stay strong and good luck

Hi Anacrusis,
your reply is very interesting; your words are just those I should have told to that negligent doctor.
Thank you very much to you and to everyone who replied to me for your replies.
I want to make all you know that by now i will post only in the specific MG forum. So see you soon there.
Bye
Cristina

Cristina, since Italy has a higher-than-normal incidence of Celiac Disease, have you been tested for that recently?

It sounds like you might have MG; many people with MG have problems with Gluten (found in wheat, barley, and rye), even if they test negative for CD. A gluten-free diet could alleviate some of your problems with fibromyalgia and Hashimoto's, at the very least.

You may want to ask your doctor to run a blood test for Celiac Disease - just make sure that you are still eating gluten when you have the test done. Even if you test negative for CD, you might want to try a GF diet - many people with MG find that they feel better when gluten is eliminated from their diet.

Italy is at the forefront of Celiac Disease research, as well as GF awareness, so it should be relatively easy to switch to a GF diet. Our family went GF in 2008 when our youngest child was diagnosed with CD - I felt so much better after just 24 hours on it that I've had no problem staying on it ever since. (I was diagnosed with MG in 2010)

I hope that you are able to find answers soon -

I didn't ever tested for celiac disease. thanks for your advice but this is an illness i think yet of and i tried in the past to follow a gluten free diet without a great success. I had some relief regarding intestinal gas but no other.
However it could be helpful like you suggest to do a blood test for it.
thanks again
Cristina
PS: yes Italy can have some good qualities like the advance in some medicine fields but it's not a place where to live at least for persons like me; if you are young or quite young like me and want to improve your work place this is not the country for you, you will be only rejected and critized.

Hi Cristina,

So sorry for what you're going through. Did they check your potassium levels while you were weak? Have you read about periodic paralysis? I know a lot of people with that disorder who have a very similar hospital story as yours. I'm not saying you don't have MG or you do have that, just wanted to make sure you are familiar with it just in case.

Tatia

Hi Tatia thanks for your support; i'm glad to hear i'm not alone and there are a lot of people with similar stories like mine.
No doctors didn't check my blood potassium; i talked about hypokalemic paralisys because it can be associated with MG and the features of this illness are quite similar to my symptoms during those crisis.
then the crisis can be also MG crisis because i had difficult in breathing too but even hypokalemic crisis has this characteristic so it's difficult to know if i had one or another because of lack of tests like blood test or EMG during these crisis.
I think doctors didn't do any kind of test because they thought since beginning it was a psychiatric disorder catatonic one so biased against me having so a really wrong behaviour.
Cristina