The uncaring health care system, or why neurologists seem so unsympathetic

I know, I know. We've all heard the stories about neurologists who treat their patients like objects of no interest, who never seem to take your pains and troubles seriously, who are in and out of the clinic room in 2.2 milliseconds.

They seem to be everywhere.

I used to get all hurt by their reaction, too - I'd leave muttering and cross at the world and hating the neuro in particular. Of course, I was going to one of the top neurologists in the country (and he knows it), and was profoundly uninteresting to him as I was still walking and talking.

In my mind I was degrading by the minute. But then, he wasn't evaluating my cognitive abilities or my depression. He was only interested in my walking. Which was something I didn't understand until I looked into MS studies and found that, at that time, that was the only assessment routinely done. (this is changing, thanks to Bart's MS save the hand focus).

But I've been ten years with this disease and I've gained some perspective. And some sympathy for the neurologists. (Not for my one from before - he truly IS an ass, and some are) I've worked with neurologists on projects, I've participated in research, I've made my own panicked calls to the clinic begging for help. What I've discovered is that they are an interesting and interested group of individuals who really do have a dismal job. Most of their patients do not get better.

Brain injuries don't tend to get better. They progress (in MS, Parkinson's, Alzheimer's, Huntington's, etc etc). Doctors (and MS Nurses) are supporting a crumbling wall, catching the biggest falling stones, having to let the smaller ones tumble.

When I was first diagnosed, I must have called my MS nurse a zillion times. I would have a symptom, it would bother me, so I'd call. "My foot is in a spasm and it hurts". "Yes, that happens," she'd say. "I'm completely numb on my right side". "Yes, that happens," she said. "My vision is all blurry!" "Yes..." And on and on.

God bless her, she never said, "Would you please stop bothering me? I have real sick people to talk to!" Because she did. The people who were paralyzed, who couldn't swallow food, who had horrible kidney infections after storing urine for weeks, people who had gone blind with optic neuritis. People who were truly suffering, as vs me, who was being BOTHERED.

Symptoms are awful, painful, exhausting, depressing. I hate it when I can't see properly. I grieve when I can't pee or pee when I shouldn't. I live in total fear of fecal incontinence. I miss being able to feel things.

https://www.mstrust.org.uk/research/research-updates/update130313-longer-lasting-sight-problems-ms-how-common-are-they

But hey, I'm also getting older. Maybe my blurring vision is due to cataracts. Maybe those aches and pains are because I've lazily sitting about instead of exercising.

Or maybe they are signs of my MS progressing. Truth is, there isn't a whole lot that can be done about that bit. Yes, medications - the disease modifying ones - and we should all be taking something like that. Vitamin D - yep. Antispasm drugs. Medical Cannabis. etc. But truth be told, other than the disease modifiers and Vitamin D, nothing will stop this train we're on. Yet.

We can adjust the pillows or ask for a warm blanket, but it's really up to us to try to make ourselves better. Rest, exercise, stretch (whatever parts you can). Eat as well as you can. Avoid salt. Enjoy life as much as possible. Rest. Laugh. Like most chronic diseases, MS is up to us to manage. We have to take responsibility for a lot of it.

And leave the neurologists time to see those who are being consumed by galloping MS, who are dealing with people dangling on the knife blade of serious progression. Leave them time to do research, to find a cure for this dratted thing.

It's terrifying to take responsibility for your "itching swelling brain," and I don't mean to discourage anyone from checking to be sure a flare-up isn't something more serious. Lately I've called when I couldn't pee, and when I lost myself for an hour and felt panicked. (also a pee issue - a urinary tract infection). Both times I got an immediate caring response that dealt with the issue. I don't call when I'm in pain, or tired, or can't read well anymore. With perspective, I know that if I stretch, drink more water, rest, move, this will likely pass, and if not, there probably isn't a solution. (yet) And I whine to my MS support group and they whine to me and we understand each other.

Life sucks. MS sucks more. So does diabetes, arthritis, cancer, etc. We aren't the only ones who deal with stuff on a daily basis. Sometimes we just have to bite the bullet and suffer in silence.

What do you think? Let me know in the comments!

Pain and MS, including those with an axe to grind

Oh legs. Legs'o'mine. Couldja leave me alone just for a leetle while?
I still don't get it - why is there so much numbness plus so much pain? Surely they should block one another out?
But no, here I cringe, legs repositioning every few minutes while I struggle to feel my fingers on the keys.
I do wish I understood this disease better. I wish anyone understood it better.
And thanks, CCSVI advocates for once again sending me an unnecessarily long and gruesome post to my CCSVI, the terrible temptations post. Every few months you send me one. It's tedious.It's advertising, pure and simple. Usually I delete the comments, made as they are by some mailing robot that spasms, like my legs, unexpectedly, and shoots out blather.
I've decided to allow this one because we are at the point of doing a study here in Canada that looks like it will be carefully designed enough to actually give us some answer, unlike all the observational studies done before. This study will assign patients with venous "obstructions" to control and experimental groups and do mock procedures on the controls. Everyone involved will be blinded as to who got what procedure. then, a year later, the groups will be switched, so everyone will end up with the procedure (important as it is an invasive experiment) and the same person can be evaluated throughout the experiment for effects. I don't know if they are following the procedures with physical therapy, my own personal thought about how the benefits are accrued from the procedure.
So in two years, we should have some hard research results.
Best thing is that the doc who is leading the study, while one of THOSE( neurologist) types, is also one of the most caring, considerate, and thoughtful neurologists I've happened to meet. I've worked with him on the Canadian MS registry project through CIHI and he is a good man, not given to self-aggrandizement, prone to listening to ideas, and open and easy to speak to. I'm hoping the centre in Montreal is going to be led by my other favourite neurologist, another gem of a doc. I'd mention their names but I don't want them to be swamped with people demanding care to the point they burn out. Nice neurologists are not common out there. tremendously smart and knowledgeable ones, yes, but pleasant and friendly, not so much.
Perhaps, unlike my numbness and pain, niceness and smartness don't normally occur together.

But in some lucky or unlucky instances, they do.

Saving all your foodstamps and burning down the trailer park

http://www.youtube.com/watch?v=s8zn63ADiIE


Soy un perdedor
I'm a loser baby, so why don't you kill me?






Sometimes, with this little MS thing, you feel both like a loser, and angry enough to burn down trailer parks. 
I can't even begin to tell you how TIRED I am of being told I look fine, when I've managed to drag some sensible self out of me for an hour or so in a day.
I feel frustrated that I have to explain and explain and explain, even to those who know me.
I'm tired of trying to learn the lingo for being taken seriously by doctors and neurologists.  
I'm fed up with dealing with the probable side effects of medications that may not really be helping me after all, and if they are, well, it's not by much.


I imagine everyone with a chronic disease, especially if they are outwardly semi-vertical and smile, deals with this anger and frustration at not being heard. On the one hand, we're PISSED that we were given this wee challenge to mess up our lives - on the other hand we are FROTHING at the mouth about trying to explain it yet again to someone. Or excuse ourselves, or explain why we can't do something or whatever. Grrr.
Just saying....
Seriously, I don't feel like a loser, nor do I want anyone to kill me.  But there's something in that song that calls to me. Perhaps that's because when I talk to health care professionals, I feel like I should be singing it to them...
Whaddya think they'd say?

Oh if my neuro could see me now!

The guy thinks I am fine, barely attacked by this disease.
It's true, I am one of the luckier ones, but after two and a half days of twitching, I don't feel that way. My hip joints are spasming, all of my muscles are doing a gentle rhumba (but they haven't got their act together so it just looks like those scenes from Alien where I have ripples under my skin), I can't see to read or drive (though I have done both) and I'm so tired I am sitting with my jaw hanging open...

It's pretty attractive, lemme tell you! I am avoiding carrying hot or heavy things, and am heading to bed again shortly after spending yesterday lolling about there.
I hate lying about. Hate it. So tonight, a muscle relaxant to perhaps stop the spasms and give me a good rest, and hope for a better tomorrow.
I just wish my doc could see me now....
Oh, and the hip flexor action made for interesting driving!!!!! Good thing I could use cruise most of the time. I think I should perhaps be more careful about driving when I twitch and can't see...but most of the drivers drive as if they too are impaired, so at least I don't stand out. ;-)

an irritant

I've been thinking. One of the things about being an independent person is that you think you can do everything yourself, and you wander about, trying on your own, when really, having an advocate with you would be a much wiser thing.

Going to see the neurologist, for example.

I sat there at my last appointment, watching the doc lose interest in me as my disease just isn't quite exciting enough for him. I watched his face change as he changed his view of me from "potentially interesting client" to "over 50 woman who has whined for years about aches and pains and they probably aren't due to MS". I watched as his face changed from engaged to absent.

This happens a lot with this MS thing. I don't know what I am expecting - perhaps that someone might tell me why , if my disease is so minor, I am almost completely numb stem to stern, why my legs muscles spasm up and down without reason, why walking is so painful when it really shouldn't be. Or why on days like today I have trouble thinking and tend to drag my mental floss through brain plaque with no effect.

It's frustrating as hell.

And yeah, I know I'm not as sick as some, but I've gone from hours in the gym to not being able to walk more than a km. I've gone from full-time high stress employment to barely able to manage volunteer activities. My life has been destroyed over the past two years - not being negative, and stuff still remains that is good - but I mean, really.

So as I sat there and he told me my disease was merely an irritant to me, (see salt in wound...), I didn't speak up. I am always wary of pissing off my care providers. I know docs turn against the complainers.

But if I'd had an advocate with me, perhaps they would have grabbed the collar of my healthy neuro, and asked him the questions. Perhaps they might have demanded more. Not that there is much anyone can do. But perhaps I would feel a bit less tossed aside like limp lettuce.

I got my return visit letter the other day. The neuro doesn't feel I need to be seen again for another year. Surprising, the anger I felt getting that letter. Nothing like feeling unwell and being told that is unimportant to anyone.

Now that's an irritant.