NinaP
Distinguished member
- Joined
- May 24, 2018
- Messages
- 151
- Reason
- Lost a loved one
- Diagnosis
- 04/2018
- Country
- GR
- State
- KO
- City
- Ptolemaida
Mum can only move her right hand now and that is very stiff right now, she hardly lifts her right leg which used to be so strong. She lost amost everything in 4-5 months. Happened so quickly. We were diagnosed in Larisa in a great University hospital, my younger sister lives there. After visiting so many doctors and neurologists. A woman neuro from another city told us that it could be autoimmune and we should go to a good hospital, Till then doctors were telling us it could be phsycological or something since all her tests were great,
They gave us a diagnosis in 3 days, even before the emg, from the clinical image. The EMG just confirmed it, till then i was hoping it was myasthenia gravis. Her head being high and her back makes her breath better? Nobody told us.
I had a doc visit her on Friday to check her breathing he said it was pretty good. This week i would get a nose mouth doc to check her eating and swalloing, she cheked her again about 25 days ago and said it was great and should just eat carefully and slowly. We pay for all that, her insurance only pays for the medicine, we pay all the rest. The doctors get 30 t0 50 euros per visit. We spend about 2500euros per month, and not counting all the tests and doctors before the diagnosis. I also stopped working and that is a leave without pay. Going to check on hospital beds this week and from what i asked its 80euros per month the good ones.
Where i live we have the biggest cancer percentage in Greece, heart and strokes. We are Greeces industrial center with 4 power factories and so much pollution, you can check on line. So we lose 2-3 people per day from that and rather young ones, so people are used to that and dont care to demand better things. Closed ones and close friends were telling me at first that i should be happy mum reached 70 since so many die much earlier here.
Imagine that we had to wait almost over am onth to start therapy waiting for the medicine because its so rare. And now that the first bulk is almost over the second one is not here year and i have to go check tomorrow and mum most likely is going to be without her medicine for a couple of days. Its like telling you leeave her bedridden and hope for a peacefull death. I myself have started begging for a peacefull death and hope she wont live all those terryfing things.
This morning was my first outing in 3 days. Went for a coffee, and mum called to ask when i was coming back even though my younger sister was with her.
These past 5 months iam so sick of doctors and hospitals. We lost our dad aafter 6 years of being sick and seeing mum like that. You guys telling me to go check myself but iam so scared you know. Scared. Phew. I dont want to go to another doctor. We just eated our first ice cream for the season and it was great. But mum is so down right now mentally. We carry her from bed to couch with a wheelchair and then back to bed. I dont know what to do to help her more. She wakes up almost every two hours per night.
Thank you all for the messages. Again sorry if i sound so unaware.
They gave us a diagnosis in 3 days, even before the emg, from the clinical image. The EMG just confirmed it, till then i was hoping it was myasthenia gravis. Her head being high and her back makes her breath better? Nobody told us.
I had a doc visit her on Friday to check her breathing he said it was pretty good. This week i would get a nose mouth doc to check her eating and swalloing, she cheked her again about 25 days ago and said it was great and should just eat carefully and slowly. We pay for all that, her insurance only pays for the medicine, we pay all the rest. The doctors get 30 t0 50 euros per visit. We spend about 2500euros per month, and not counting all the tests and doctors before the diagnosis. I also stopped working and that is a leave without pay. Going to check on hospital beds this week and from what i asked its 80euros per month the good ones.
Where i live we have the biggest cancer percentage in Greece, heart and strokes. We are Greeces industrial center with 4 power factories and so much pollution, you can check on line. So we lose 2-3 people per day from that and rather young ones, so people are used to that and dont care to demand better things. Closed ones and close friends were telling me at first that i should be happy mum reached 70 since so many die much earlier here.
Imagine that we had to wait almost over am onth to start therapy waiting for the medicine because its so rare. And now that the first bulk is almost over the second one is not here year and i have to go check tomorrow and mum most likely is going to be without her medicine for a couple of days. Its like telling you leeave her bedridden and hope for a peacefull death. I myself have started begging for a peacefull death and hope she wont live all those terryfing things.
This morning was my first outing in 3 days. Went for a coffee, and mum called to ask when i was coming back even though my younger sister was with her.
These past 5 months iam so sick of doctors and hospitals. We lost our dad aafter 6 years of being sick and seeing mum like that. You guys telling me to go check myself but iam so scared you know. Scared. Phew. I dont want to go to another doctor. We just eated our first ice cream for the season and it was great. But mum is so down right now mentally. We carry her from bed to couch with a wheelchair and then back to bed. I dont know what to do to help her more. She wakes up almost every two hours per night.
Thank you all for the messages. Again sorry if i sound so unaware.
