 |
|
| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
| Reply |
|
|
Thread Tools | Display Modes |
04-29-2022, 04:08 PM
|
#1 | ||
|
|||
|
Member
|
Meetings and deadlines has had me gone but needed to check in. Called Mayo today and based on the IVIG try and continued worse breathing I was offered an Appointment in June. My daughter doesn’t know yet. So worn deeply today and struggling. called my pharmacy and was told I had a prescription for a sleeping pill!! It was for sleep clinic test that old neurologist ordered from when I was in hospital for IVIG in March. Seriously this guy was without a decent exam or conversation giving me a pill that best case would cause a fall and worse case stop my breathing!!! He thinks that because I walked to the toilet in hospital after steroids and IV fluids I am better than I say. He actually said he saw me as like a gotcha. He is such a jerk moving my arm is his idea of a neuro exam. I admit this has shaken me. I am at deep risk until I am better diagnosed. At least the breathing part which I am serious NO ONE gets here in Iowa. In 2008 my pulmonologist did.. He sent me to Mayo. He moved away. The good ones do. Sculptor 44
|
||
|
 Reply With Quote
|
|
05-09-2022, 08:04 AM
|
#2 | ||
|
|||
|
Member
|
It is more difficult to do daily tasks so getting here is still not happening as usual. It seems clear that Gammagard has affected my Renal system. But at same time I have turned a corner finding my breathing better allowing me to sleep longer and more comfortably. I called the neurologist I did a Televisit with in November at Mayo to report the Gammagard and generally declined status. I got a call back same day. I tried to push what happened a year ago when I was was so much worse I collapsed and had to come home before testing. I need to add here that I didn’t agree with the path that appointment was gonna take me and I was too sick to try to fix it. My daughter was scared and furious. The pulmonologist a year ago at Mayo was not my original one. While new guy gave us important information he didn’t interview me. He was very disrespectful. Anyway I have to fix the mess from last time tho someone at Mayo gets it as I was changed to a new Path with this current neurologist. Sculptor 44
|
||
|
|
Reply With Quote
|
| Reply |
|
|
Similar Threads
|
||||
| Thread | Forum | |||
| Mayo clinics | Reflex Sympathetic Dystrophy (RSD and CRPS) | |||
| Where are the 3 Mayo Clinics located? | Reflex Sympathetic Dystrophy (RSD and CRPS) | |||
Mayo Clinics/ Sleeping Pill Scare
Linear Mode
