Sorry to be in a pissy mood

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pumpdoc

Distinguished member
Joined
Jun 19, 2010
Messages
129
Reason
PALS
Diagnosis
02/2010
Country
US
State
California
City
San Marcos
But if one more doctor says do you you feel ok i'm going to scream, no I have a fatal disease, I could care less about my bp, colesteral etc. what's it going to do , kill me?
 
You don't like them to ask you if you "have any health issues"?:shock: I was speechless the first few times. Oh--and after an exam, they tended to say that I'm such a healthy woman. You have to laugh. And! My ex Neuro, whom I saw only every six months, saw me in a wheelchair the first time, smiled, and told us I hadn't grown any worse. OK, I have to mention the movie "Wit", not for anyone with emotions near the surface, but it portrays exactly how doctors should not act.

When he first checked my blood pressure, it was sky high for the first time in my life. The Neuro (Ex) expressed shock. I told him it was not an issue, and not to worry about it.

Smile, Pumpdoc...Have a great evening.
 
I hear you Pumpdoc. It's a routine question that people just ask automatically. It drives me crazy too.
 
I'm with you guys! My gastro doesn't mind that I'm slowly starving, but freaks out when my blood pressure is off, even when I assure her that I'm constipated and it's just minor AD*, no big deal. People on "Very Low Calorie Diets" have to see their doctor twice a week, I can't even eat that much most days and my gastro cheerily sent me off with plans to see me in six months. I don't mind that from my neuro, as there's nothing he can do and PLS isn't a bad gig anyhow. I do mind it from the person who's supposed to make me capable of eating.

The time I blew up worst was at the area's high-fallutin' neuro-opthamologist. My neuro wanted him to figure out why I was losing color and constrast vision. Some of the staff were really nice and held me up through the tests, some had too much to do and that if I couldn't hold my head up to the thing, they couldn't help. The doctor didn't even care that he hadn't tested either of my visual deficits or many of the other tests he had ordered... he just shrugged it off and told me it was currently "under the radar". It's not under the radar if you turn the radar off! He didn't even take the time to make a practical suggestion or two about dealing with the low vision I have. It was a complete waste of three very painful hours.

Arggh.

AD = Autonomic Dysreflexia, A problem in spinal cord injury that affects the sensory neurons. My HSPish PLS has removed some of my sensation in my legs and butt. (HSP likes to do side damage late in the course of it.) AD happens when your body is trying to register discomfort/pain/trouble, but the pathway doesn't work. The report ends up circulating around your parasympathetic system, raises your blood pressure, makes your above-injury skin warm and red, below becomes pale and clammy. In serious cases it requires meds, but light cases like mine just take some quality toilet time. The biggest danger with it is being treated by medicos that don't understand AD or understand you get it, who over medicate your high BP, and when the discomfort passes, the meds dump your BP to nothing.
 
The first time I went to the clinic my blood pressure was higher than it's ever been - gee I wonder why? I think it was the underlying fear of a fourth emg (it would have been 3 of them in less than 3 months). They tell me I'm doing great....my mental response: Really? Mentally yes, I'm ok, but physically, not quite.
 
Many Dr's do not have the best bedside manner and often have a God complex. That being said they are just doing their job and what they were trained t do, certainly at times showing more compassion and empathy would certainly go a long way. That being said while they know they can't treat your ALS they are trying to hell where they can. To answer your question yes High Bloop pressure and Cholesterol can kill you. We have been dealt a bad hand with ALS diagnosis and do not know if we have 2, 5 or 10 years left. This forum is littered with people who have survived over 5 years. So while we do not know when our time will come, a heart attack or stroke could certainly cause it to come sooner then it would with the ALS alone.

We all would prefer to not have ALS but I for one am going to keep on living not prepare to die.
 
Agreed with that last statement! I for one am packing in as many activities while I can. I'm not going to let a limp and messed up hands mess with me. I only hope someday down the road with this awful disease I'll be able to keep this positive view as well as you do TedH5! BTW my BP has been low all my life and I really think the one higher reading that day was stress induced. The doc wasn't worried, but it surprised me!
Mary
 
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