Aa
neorologist appointment so good, I need a reality check
That's all, this neruologist is so thorough and understanding I think my brain is short circuiting. I am programmed to hate all doctors. How could he do this to me? Take me so seriously, pursue my case so doggedly? I am a low life NHS patient who is not paying him for his time! I must have lost touch with reality, in my real world doctors are not like this. They are dismissive and patronizing and incompetent. I cannot handle a consultant doing their job, it is too far outside my understanding of the world. Such, such....cruelty. How dare he do all the right things, and more! He has driven me insane. I need to complain, to fight, and all I get is this perfect treatment. Reality is collapsing around me.
It gets weirder. Just typed a long response and as I was about to submit the computer crashed. Will try again and keep it brief(er)
Short version - thanks for joy, concern and thoughts, strange as some of them are, but I know what you mean (Jen). Sainity resotored, despite lack of aftercare for the damage to my preconceptions caused by this neurologist. When they get that far up their career they are not supposed to be caring and thorough any more, not in my world, it's the ruthless politicians who stride up the medical career ladder....okay, this is where I do start to sound insane and need computer to crash again.
Oh, still online. As it is the core of my personality these days to fight and be cynical, I was very relieved to receive a nasty letter in the post this morning regarding another extremely serious (non-medical) battle going on. It reassured me my world was again normal. Also I fondly remembered the ongoing struggle to clear my name from the doctor who muddied it a while back. So I can relax, not all doctors are wonderful, my world is righted again.
Quix to answer your question this neuro didn't formally diagnose anything. He wanted the eye experts to assess the visual stuff, but did comment that my pupils were drifting when he looked at them closely. He mainly re-examined my legs to give a full report to this neurosurgeon. He said the reflexes were barely discernable but were present, (I have heard that generally with CNS problems it is the opposite?) He sent me for loads of bloodwork, and talked about rare conditions. The point he was making was that he was assessing me for everything, based on every tiny abnoramility in any result. That is what threw me, he wasn't pretending to have the answers, or generalizing, just doing exactly as I have always wanted, taking an open minded scientific approach. I just find this so rare in consultants, usually they have reached a stage in their career by the where they are beyond caring. There's me stereotyping but we all know how common it is. I sadden watching the enthusiastic medical students progress through their careers into clinically poor consultants, as they learn from....oh god this is supposed to be the short version.
So yes I am back to my old bitter and twisted self and recovering from the shock of this consultation. Am not seeing him again for a few months, time to renew my cynicism aplenty. Oh yes, he's also booked me to have my brain activity monitored overnight...hmm. Maybe I turn into a warewolf or something.
No mention of MS at any point. Good. As written in the health pages here some consultants are quick to diagnose it without fully exploring other causes. Somehow in the consultation we didn't get to review the MRI, but no mention of lesions of MS type came up. There are lesions, which is what he is investigating, but not MS ones it seems. Can't believe I forgot to ask him to see the MRI! But he was busy explaining how it had been assessed by a team put together to look at complex cases, and he was also annoyed at the radiologist for not giving more information. Seems my brain is fine, relief. But they may be honing in on a problem in my spine. He said it was rare, and not even likely, but from the MRI and my symptoms it needed to be investigated. Also decided to look at possibility of Myasthenia Gravis (I think) but he seemed to think that was a very long shot. Like I keep saying, very thorough.
May not get answers, he did warn me, and if all that can be done has been I will accept that. But it seems he wants to keep going until we do get to the bottom of this. I put a comment on my letter to him about wanting to get my life back, seems he is trying to help here. I hope my trust is not misplaced, was let down badly before by a consultant who I trusted, I found out what he was saying about me behind my back. But I have to take this man at face value, and he is doing all the right things. For all I know he may even despise me, gossip about me, who knows, but while he's providing such a top service for now he has my trust.
Now will the system let me submit this time? Was even more vocal in my last attempt!
I wish you all fabulous treatment from your doctors. I can wish can't I?
Short version - thanks for joy, concern and thoughts, strange as some of them are, but I know what you mean (Jen). Sainity resotored, despite lack of aftercare for the damage to my preconceptions caused by this neurologist. When they get that far up their career they are not supposed to be caring and thorough any more, not in my world, it's the ruthless politicians who stride up the medical career ladder....okay, this is where I do start to sound insane and need computer to crash again.
Oh, still online. As it is the core of my personality these days to fight and be cynical, I was very relieved to receive a nasty letter in the post this morning regarding another extremely serious (non-medical) battle going on. It reassured me my world was again normal. Also I fondly remembered the ongoing struggle to clear my name from the doctor who muddied it a while back. So I can relax, not all doctors are wonderful, my world is righted again.
Quix to answer your question this neuro didn't formally diagnose anything. He wanted the eye experts to assess the visual stuff, but did comment that my pupils were drifting when he looked at them closely. He mainly re-examined my legs to give a full report to this neurosurgeon. He said the reflexes were barely discernable but were present, (I have heard that generally with CNS problems it is the opposite?) He sent me for loads of bloodwork, and talked about rare conditions. The point he was making was that he was assessing me for everything, based on every tiny abnoramility in any result. That is what threw me, he wasn't pretending to have the answers, or generalizing, just doing exactly as I have always wanted, taking an open minded scientific approach. I just find this so rare in consultants, usually they have reached a stage in their career by the where they are beyond caring. There's me stereotyping but we all know how common it is. I sadden watching the enthusiastic medical students progress through their careers into clinically poor consultants, as they learn from....oh god this is supposed to be the short version.
So yes I am back to my old bitter and twisted self and recovering from the shock of this consultation. Am not seeing him again for a few months, time to renew my cynicism aplenty. Oh yes, he's also booked me to have my brain activity monitored overnight...hmm. Maybe I turn into a warewolf or something.
No mention of MS at any point. Good. As written in the health pages here some consultants are quick to diagnose it without fully exploring other causes. Somehow in the consultation we didn't get to review the MRI, but no mention of lesions of MS type came up. There are lesions, which is what he is investigating, but not MS ones it seems. Can't believe I forgot to ask him to see the MRI! But he was busy explaining how it had been assessed by a team put together to look at complex cases, and he was also annoyed at the radiologist for not giving more information. Seems my brain is fine, relief. But they may be honing in on a problem in my spine. He said it was rare, and not even likely, but from the MRI and my symptoms it needed to be investigated. Also decided to look at possibility of Myasthenia Gravis (I think) but he seemed to think that was a very long shot. Like I keep saying, very thorough.
May not get answers, he did warn me, and if all that can be done has been I will accept that. But it seems he wants to keep going until we do get to the bottom of this. I put a comment on my letter to him about wanting to get my life back, seems he is trying to help here. I hope my trust is not misplaced, was let down badly before by a consultant who I trusted, I found out what he was saying about me behind my back. But I have to take this man at face value, and he is doing all the right things. For all I know he may even despise me, gossip about me, who knows, but while he's providing such a top service for now he has my trust.
Now will the system let me submit this time? Was even more vocal in my last attempt!
I wish you all fabulous treatment from your doctors. I can wish can't I?
I hope my shout of joy for you didn't wake you from your break from reality!
I am so happy for you, may this wonderous insanity continue.
There is hope; I knew it!
Kathy
I am so happy for you, may this wonderous insanity continue.
There is hope; I knew it!
Kathy
Yahoooooo! I hope he continues be great--right through getting you diagnosed with whatever it is that's wrong!!!! He better--or I'm going to head to the UK to straighten him out!!!
Deb
Deb
This is AMAZING, awesome, and wonderful... (but not fair, can you share?)
~Sunnytoday~
~Sunnytoday~
You sound absolutely euphoric! I think it's great. That's why we advocate trying new doctors. Eventually one will SEE YOU and listen to you and try to do the right thing.
I wonder if you are having ON? Did he say anything?
Quix
I wonder if you are having ON? Did he say anything?
Quix
Don't worry, something horrible will happen to you that will balance everything out. ;-)
I have one of those Neurologists too. It took me YEARS to find one. She is gentle, kind, holds my hand when she explains something to me and is very thorough. After years of incomptent b o o b s, she is like a breath of fresh air. I'm so lucky after all these years of searching.
Glad you found someone from "her class," as well.
GREAT NEWS!
Heather
Glad you found someone from "her class," as well.
GREAT NEWS!
Heather
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