NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR › Reply To: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR
You should just gather ALL of those records and take them somewhere else. Many ER doctors are salaried with their local hospital for a reason (IMO), they aren’t suited for successful private practice.
I’ve had upper hot and lower cold. Veins bulging above waist and retracted on lower freezing half. Insane, right!
I’ve never had either side being diff like that.
I wouldn’t dare go to the local ER where I’m at now as I truly believe they could be negligent or incompetent enough to cause serious harm to me. I have, however, gone to bed at night wondering whether or not I would wake in the morning. Sorta like the couple of times, long ago, when I drove tired at night from a trip and thought that I’d rather wreck and have the police present versus pulling over to sleep and risk being raped and mugged. Yes, I know it’s wrong to ‘drive tired’ but I was very young. Risking death in my sleep seems to me to be the lesser of the two evils – as bad as that sounds.
Now, everyday is sorta like those couple of extreme times of driving tired and that one exhausted time in High School when I almost fell right off my chair due to inability to remain upright due to profound exhaustion. So weird, huh.
There’s not much use looking for medical help if I’m not going to receive any. I can feel good about my physical therapy (since exercise is good for nearly every ailment). My PT has helped me out with frozen shoulder and has given me basic info that I’ll remember just cuz she said it during such a critical time. She says, “We were designed to move” and need to make sure our bodies move, at least a little, to prevent further injury – such as frozen shoulder, etc. At least that is something that I can feel proactive about. Once per week for 30 min. Even if I’m not furthering my abilities, I should be maintaining – which my genetic doctor said is the goal – slow the degenerative process of EDS.
I try to make any positive medical provisions that I possibly can. I’m just so limited.
Anyway, if you gathered your records and took them to a specialist, I’ll bet you’d get a heck of a lot of answers.