Hi everyone,
I will tel you what hapened to me recently because it's a shame
My name is Cristina, I'm 39, I'm an Italian clinical pharmacist and I live in Italy.

I chose to join this group because i think to suffer of myasthenia but i need help by

those who really suffers of this illness to understand if really I have it or no.

I should need an opinion of a doctor too if possible online so that i can print it

and make it see to the neurlogist who followed me in the last hospitalization.

I ask your help because I got frustated by the doctor's here in Italy; they are all

arrogant and they don't listen to patients' symptom.

I tell you what happened to me so the judge about hospitals here in Italy will be up

to you. This fact regards hospitalization.

On March 28th I went to workplace as usually; in the morning of that day and in the

morning of the previous day I took high doses of cortisone as prescribed by my doctor

because a very great low back pain.

About 11:30 am about I began to feel great weakness in my legs and i felt them yeld

like falling to the ground more and more times.

So I had to phone to central work place to ask for someone to come and replace me at

work.

In the meanwhile the weakness began so much great I couldnt stay on my foot, my face

began very pale. When the colleague came he decided to call ambulance and they took

me to emergency room. There the weakness along the hours spreaded to my arms, hands

so it was dfficult to raise them and eyes where so heavy and burning it was difficult

for me to stay with open eyes.

The doctors decided to admit me to neurological unit and i stayed there until April

30th when neurologist decided to bring me to another hospital in another unit to

follow rehabilitation.

During my staying in neurological unit, all the three neurologists who followed me,

after seeing diagnostic test were negative, didn't try to understand what was wrong

in me (you know there are seronegative illness like myasthenia that doctors have to

diagnose through symptoms because the tests are often negative) but they followed the

simplest way discharging me from their responsabilities and leaving in the hands of

psichiatrists.

Really during my hospitalization i suffered of 4 attacks when, after strenous

exsercise, I falled like in a paralysis; during these episodes I couldn't open my

eyes or my mouth and I couldn't move because of extreme fatigue and weakness even if

I was perfectly awake and could hear what happened around of me.

The neurologist soon after the first episode happened early after the admission, made

the opinion I had a psychiatric disorder without thinking to other possibilities like

a hypokalemic periodic paralysis which can be correlated with myasthenia.

So along my hospitalization, even if I went on telling doctors my symptoms, they went

on telling me I didn't have any organic illness and that probably my symptoms were

due to somatization of psychological problems so i needed to get to psychiatric unit

to be tretated with appropiate therapy.

Incredibly only after 30 minutes of talk, the psychiatrist called by the

neurologists, diagnosed me the "Munchausen syndrome"; for the ones who don't know it,

this is a psychiatric syndrome when the affected patient simulates and thinks up to

symptoms in order to get the attention of other people. This was the most offensive

thing the doctors could tell me.

Clearly the doctors didn't believe me since the beginning of my hospitalization and

instead believed along with nurses that i was lying on my symptoms.

What about nurses? They followed entirely the behaviour of doctors. I went through

insults, teasing and disrespectful behaviours by them. When I reported my symptoms to

nurses as i was my duty they didn't often report them to doctors and often they

teased me; once I had a fasciculation on my neck and when I reported this to the

nurse I heard clearly she laught in the hallway with other nurses telling "what kind

of imagination this girl has!". Think you all how I felt by hearing this words!.

Then there were two serious epoisodes could hurt me physically too and that should

make know to public because these are facts shouldn't happen in hospital never;

another reason these facts should publicized is that the neurologica unit where I was

admitted received a prize and a national journal proclamed it as the best

neurological unit in Italy, clearly without worthiness.

The first episode regards an administration of a wrong medicine to me; at that hour

of the day I had to take a tablet but that specific day the nurse took me two tablet.

I state that I took the other medicine even if I didn't take it previously because I

was just recovered by one of the attacks i described above and I thought doctor

prescribed me a new drug because of it. After taken soon I suffer of burning of my

throat that lasted for the entire day and after about 30 minutes I began to suffer

of severe headache, palpitations, sweating and when a nurse measure my temperature it

drops to 35.5 degrees celsius, low enough to cause me health problems.

I asked several times to nurses and then to neurologist what kind of drug they gave

me without an answer; really nurse (another nurse because the one gave me the med was

yet out of hospital) told me that i got only the proper med when clearly nurse took

me two tablets not one.

The neurologist told me the same and assured me he would have phone to the nurse

taking me the meds. Then when he went back to me, after phone call, he replied that

the nurse at home told him clearly he gave me only the proper med and that there was

no reason he souldn't believe to the nurse.

This is the first episode i should report.

The second one is even more serious: after a great physical effort in bath at 10 pm I

had to call the nurses to hel pe to go back on a weelchair because i felt bad. I felt

like fainting with great weakness, nausea, feeling of stmach hole, sweating and

tachicardia.

The nurses tried to make me stayng on foot and m ake me sit on the wheelchair that

was in front of WC.

Suddenly my legs yielded and i falled with body between WC and wheelchair kneeled.

There were 3 nurses two female and one male that night; one of the female told me by

teasing me "When you finished to pray tell us" (I state I falled with my head on the

sit of the wheelchair, the arms along the wheelchair because of the extreme

weakness).

Then all three went out bath for a while. Then they came back and the decided to put

me on a sheet put on the floor and the leave me supine on it. The same nurse told me

again"If you like sleep in the bath so sleep!".

So after calling the doctor and after putting a vescical catheter (harmful choise

because usefullness in that situation and because i'm very sensitive to infections),

they left me with pants lowered so half-naked on a cold floor (this also an harmful

choise since i yet had a bad pneumonia during the last 2 years) for at least 4 or 5

hours.

I heard the male saying to others two "we can call another person and with a sheet in

4 person we are able to take her to bed" but they didn't do anything.

When I had enough strenghts to turn on my belly I tried to crawl to the wheelchair

put by them near my bed; while I was crawling my neighbour in the room saw my head on

the floor and called the nurses. When they saw me they tried to put me on a chair but

the efforts of crawling left me with energies and so i couldn't help them to make me

sit on the chair.So they left me with my back against the back of the chair but i was

so weak i slide backwards and so the chair beating my head on the floor; I stat the

nurses were in front of me but no one prevented me by beating my head.

Then they decided to leave me again on the floor for about an hour agreeing with

doctor they called again.

Then after having some strenght I did the same above understanding that i had to do

all by myself if i wanted to go to bed.

A nurse saw my efforts and tried to help me to sit down on the chair, really she

didnt help me if not a little.

Finally i reached the bed at 6 am since 10 pm. When i was lying in the bed the

previous great efforts provoked me breathing difficulties and cough because tears

went through throath and nurse called doctor who shouting me more times to stop like

i was agitated, then told the nurse to give me a sedative. The med caused me to be in

a paralysis status until 12 pm of the same day.

Moreover the nurses weren't professional at all because i had to ask them more times to give me my meds clearly they forgot to give them......
to be continued.........

..........
During the entire hospitalization in this hospital, I was at last able only to go by the wheelchair to bed, by WC to wheelchair and do very few steps kept by two persons even if the doctors since the beginning made me doing everyday some physiotherapy.

Actualy I'm at home and i came back home since a week; I've been discharged on my request since i recovered all my body functions and I 'm able to walk again.

This is not a miracle; you can think this because i recover every function from may 3th to may 9th when I've been discharged.

The fact is another: the doctors until that date prescribed me only meds that made me worse; they gave pregabalin which turn off the Ach signal an so my weakness got worse and i falled often. They gave an atidepressant that caused me a so great nausea i couldn't eat. So I said to myself "stop, if i follow the treatment given me by doctors i won't ever have a full recovery" and i decide to follow my instinct and to take by myself the meds used in myasthemia: prednisone, mestinon and azathioprine. In 3 days i was able to stay on my foot without tremor anymore, I gained muscle strenght and I could afford better the physical exercise.
the discharging letter tells about catatonic episodes with psycosomatic disorder and Munchausen syndrome: no one of this belonga to me and I'm very angry with doctors.

I desire to tell you what happened in another hospital really ER i was admitted more than once because of the health problems about 3 years ago.

I suffered twice of those attacks like paralysis in the past 2 years before the 4 episodes happened to me recently.

In both cases i was admitted to ER and without exams except for a quick blood exams, the docotrs sent me to psychiatrist and they diagnosed me hysteric crisis.

Another episode occurred me after some weeks since the two described above; in that case I felt great breathing difficulties and when I was admitted to ER the doctors said it was a panic attack or an anxiety attack.

In all the three episodes doctors were wrong and made me feel very bad with their diagnoses.

Now i want to tell you all the symptoms occured in the time to me so to get an opinion by you:

-diplopia

-change of voice to nasal or low when i'm tired (after the attack of the extreme weakness i had always a very low voice)

- problem with swallowing liquids and feeling sometimes of a knot in the throat so great not to permit me to swallow saliva;

-weakness of the legs, arms and hands (this latter so great i have difficultes to open bottle or open water knobs at home. The weakness of legs after efforts for example taking shopping bags with me made me to feel like to fall on the ground. Moreover I cant lift up my legs or my arms more than few seconds and they always shake.

- problem to keep open eyes even after two hours after awakening because of great burning and heavy eyes; they close even if i don't want this because of tiredness

- sleeping problems i awake several times each night.

- problem with urinary incontinence (weakness of pelvic muscles)

These are only some of the problems I have to face everyday; I state also I suffer of Hashimoto's thyroiditis, a clear syndrome linked to myasthemia like all thyroid problems.

Mestinon, since i use it, reduced all the symptoms above.

That's all I hope someone can help me and give me support

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

I agree with Annie, come on over to the MG board - There are lots of people there who've been fighting for a long time with their medical systems that will understand what you're going through. There's lots of support there if you have any questions or just need to rant to someone who understands.

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

It is pretty obvious that you have some kind of neuromuscular disorder (and very likely MG) if Mestinon is helping you at all. Be very careful with the heat with summer on the way.

Brian.

Cristina,

Happy to see you have come to be with us. Here are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Looks like you are going through a ruff period. Hopefully you will getting some answers.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

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

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.