A few months back, I switched GPs, since I had moved and my former doctor was now 15 miles in the wrong direction. The new doctor is one of those who aggressively monitors cholesterol and weight and blood pressure and whatnot that I'm not really all that concerned about, since none of that has killed anyone in my family. Still, new doctor's obsession with my cholesterol may be a good thing. I told him that it is my leg pain that is my priority. So now he is intent on helping me with that so that it will move down my priority list and he has a shot at convincing me to use statins, which I promised I would consider if he could tell me what's going on with the leg.
I've had mobility problems with my left leg since childhood, but they came and went and, when I was young, no one ever noticed unless I ended up flat on my face. And then it was chalked up to me being clumsy. And it never fully cooperated when I was bike riding; in a way that's hard to describe, my efforts to push through it always dissipated in the hip. I certainly never drew attention to it, since I was already sickly and strange and didn't need to add to my reputation as being weird by asking what other people do when their leg suddenly stops working. Anyway, over the past decade, I've used canes, a walker, and the occasional scooter or wheelchair to get me through the increasing times of my leg's unreliability. I've sought before to find out why it is getting worse, why it is constantly in pain, and if there is something I ought to be doing to arrest this decline. So, I go through this cycle of extensive, irritating tests that reveal nothing, with my questions about whether my hypermobility is causing it summarily dismissed.
New doctor has sent me to an orthopedist, which I was hopeful about because the previous doctor sent me to a neurologist. Repeatedly. And that was a deadend. Well, it was multiple deadends, but I suppose they had to rule out lesions. So, off to the orthopedist last week. And what does he decide? That I need to see a neurologist. Arrrrgh!
I have a nerve conduction study scheduled for Tuesday, and had a new MRI last week. Why, why, why? Why are they so convinced it's a nerve problem? If it's a nerve problem, why don't they think it has to do with the hypermobility? Every single one of them notices it, but then says it couldn't be the problem. Why not? Every joint in that leg slides around like a badly loaded stack of boards in a pick-up truck going down a dirt road. OK, yes, I just don't want to do the conduction study, because I've had one before, and they rank right up there with elective tasering on my list of things not to do.
Oh, well. Maybe something will be decided. And then what? My daughter asked me that, and I really don't know. It isn't like I expect that whatever is wrong can be fixed. But I would like to slow down the decline, since I feel more and more divorced from that leg to the point that we're barely on speaking terms anymore. And I realize I have to do something, because my main strategy of just ignoring it until I can't take the pain anymore is deterring me from doing things that I need to do on a daily basis.
In other news, I bought a slightly used mobility scooter for my daughter and I to share on outings. It breaks down into small enough pieces that I can pick them up and fit them into the back of my subcompact. I need to practice with putting it in and taking it out, and putting it together. I suppose I should get to it.
4 comments:
Having to slide from specialist to specialist is no fun. Glad to hear about the scooter--that should give you more time or physical comfort while you're out. And if the compact one works that's great because of increased maneuvarability, not needing a bigger car, etc.
I've had that merry-go-round too. it is infuriating. I asked the neurologist (#6, not #25) about the problems with my hands.
She sent me to the rheumatologist
She sent me to a hand surgeon for evaulation.
He said it was a nerve problem and send me back to the neurologist.
She ordered nerve conduction tests and said there was nothing wrong.
And several months on, I am still losing functionality in my hands, but no-one has any idea why or how to stop it.
I didn't tell you this story to depress you, just to let you know I understand.
I hope in your little carnival ride, you find someone who can actually help. It does happen (just not to me).
Hi Yanub,
Thanks for your nice comment on my submission for the April Disability Carnival.
I do hope some resolution is reached regarding your situation so you can figure out how best to live and do the things you need and desire. The scooter sounds like a great idea, both in terms of mobility and reduced fatigue or pain and as FridaWrites pointed out, the small size helps with space considerations. I hope all works out.
Thanks, y'all. It's been a rough couple weeks, probably good ones to see doctors in, but harsh on me all the same.
OSM--I find the nerve conduction tests most irritating of all, since to me, they represent the doctors not listening to the bit where I describe a completely bio-mechanical problem. But I must appease them to get what I want, I suppose.
Full Tilt, I am happy to be able to get to know your blog. I hope others do, too.
Frida, can you tell me, is it OK to leave the battery in the car for several days unused? I don't know why I am worried, but fretting is something I do well.
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