monstro, I just looked at your web site. I really like your work, especially the ivy bowls and vases. Nice stuff!
So.
I went to the neurologist (the one here in town) yesterday. I read the letter from the hot-shot neurologist. He strongly suspects that I have a neurodegenerative disorder and recommends more testing to pinpoint the cause. HDL type 2 (which I discovered is actually more common in people from South Africa rather than African Americans, but whatever). Chorea acanthocytosis. Some other obscure and random genetic tests for diseases that do not match my symptomology. sigh At least I don’t have Huntington’s. He got some things wrong in his notes (like my weight being stable, when I deliberately indicated on the patient history form that this was not the case. And for some reason, he wrote that my brother is dead). Oh well. Mistakes happen.
I was very angry after the visit. Yelling and screaming angry. I don’t even know why I was angry. I just was. And then it all went away and I returned to my nothingness state.
This morning as I watered the little scrap of city land I’ve turned into my personal wildflower garden, a man from the missionary place across the street introduced himself and asked if I knew Jesus. In my heart. The words that came out of my mouth were very flat and emotionless. I explained to him that I knew about Jesus, having been raised in a very religious household, with a minister for a mother. I told him I’d done the Quaker thing for awhile until all interest in God and spirituality petered out of me. He asked if I knew how much Jesus deeply loved and cared for me. Did I know John 3:16? Didn’t I feel blessed by that? No, I told him frankly. No, I don’t. I explained why and he actually conceded that my points were valid, but then returned to his thesis about God and love. I told him point-blank that it was nonsense and that I didn’t want to hear anymore of it. While I watered, he prayed out loud on my behalf. I ignored him. I was fake and thanked him afterwards, but wanted to be angry again. I just couldn’t be.
So that’s where I am right now. I don’t feel worry, sadness, or fear. I’m operating on automatic right now, just trying to focus on things that I understand. Maybe my brain really is dying. I don’t know. I can’t imagine it dying. All I can do is just keep going through the motions of life and live for the second. Whenever I stumble as I walk, I just say out loud “come on now” and keep walking. I don’t know what else to do. I just think about Harriet Tubman. She kept walking AND she had neurological problems. She walked through the marshes of the Eastern Shore to save people. All I have to do is walk four miles down Monument Avenue and drive a desk for eight hours. My life is easy peasy.
I’ll take those tests (blood’s being shipped up to John Hopkins). When they come up negative, I’ll shrug this whole experience off and wait for things to get better, stay the same, or get so bad that the answer will become crystal clear. At least I have my flowers. They’re coming up nicely and I can’t wait till they bloom.
I’d be mad, too, if my choices were not know what serious condition I had or be dealing with a serious condition that’s finally been diagnosed.
Growing things is good. Working with your hands in the dirt and growing things is good for your soul.
It’s clear to me why you’re angry. Your situation sucks.
As I said once before, I am in no way qualified to diagnose your illness. It does seem to me, though, that you’re making progress. Remember that diseases in real life do not always fit the textbook descriptions. Maybe one of the tests will be positive. If you don’t get a diagnosis with this round of tests, I would expect your neurologist to keep trying until he finds something.
BTW, you were a lot more polite to that missionary than I would have been.
Yeah me too. I would have been tempted to push him into traffic so that he could go home to Jesus.
I asked this before and I don’t believe you responded—has MS been considered? It can be very hard to diagnose. On another note, have you ever had a B12 shot?
Anyone tending a scrap of urban land and turning it into a scrap of wildflowers knows plenty enough about love, and beauty, and happiness, and souls. Anyone who makes lovely art and *gives it away for free *knows plenty enough about love, and beauty, and happiness, and souls.
I’m not your doctor and am wholly unqualified to give you a diagnosis, but I don’t think you’re dying, and I think your mother is wrong. You’ve done what you can - and you continue doing what you can still do - to make your life the way you like it, and there’s not a damn thing wrong with that. Plenty of humans on this earth never get to experience a moment of “contentment and satisfaction” and you say you have both. To me, that’s happiness right there.
Monstro, for what it’s worth - been there, done that, got the t-shirt.
I have rheumatoid arthritis. There was a period of time in my life where it seemed that even my eyelashes hurt. The pain and the reduction of mobility of my body got to me so badly that I seriously considered suicide just so I wouldn’t hurt any more.
It’s rough. All I can do is sympathize and say hang in there. Things got better for me and I really, truly hope that they will get better for you. You have a bunch of people on your side in here, all sending positive vibes your way.
And this might help. I had a variation hanging on my wall for a long time.
First, I’m so sorry to hear that you’re dealing with both the physical ailments and the frustration of doctors who aren’t doing their jobs.
And on that note, FIND A DIFFERENT DOCTOR THAN THAT NOT-AT-ALL-HOTSHOT NEUROLOGIST. That is a doctor who isn’t listening to you as a patient. You will never be properly diagnosed and treated if you aren’t being treated with even the minimal respect of paying attention to what you’re saying and providing in the forms they supposedly have you complete for a reason.
I am not trying to scare you, but trying to warn you that when lazy doctors “make mistakes” by not paying attention, people become seriously injured and/or die. I just got off the phone with a friend who’s recovering after the supposedly “hotshot neurologist” insisted she needed full-on brain surgery, then wasn’t paying attention when an intern punctured her lung, which caused it to collapse! She spent several days in an induced coma, and weeks with various tubes coming out of her back and chest. The puncture in her lung finally did heal, but she’s now going through grueling exercises to build her lung capacity up enough to go under anesthesia again.
And after consulting with another “top” neurologist at a different hospital, he told her she didn’t need open skull brain surgery, but could successfully have a procedure that uses a coil inserted through the groin area, which would be a much safer 3 hour surgery instead of the more invasive 8 hour surgery. And this is after she asked “hotshot neurologist” #1 repeatedly why she couldn’t have the coil procedure, and never got a satisfactory answer.
Stand up for yourself as a patient, and if you can’t, then have your therapist step in again. Either you need to be your own advocate, or you need to tap a friend or family member to be an advocate on your behalf. Do Not dismiss utterly irresponsible “mistakes” from a doctor, ever, no matter how insignificant they may seem.
Believe me, I know how much of a pain in the ass it is to find new doctors, because I’ve had to do it numerous times until I found the right one who would listen to what I was saying and take me seriously. But you have to do it.
I’m with you on the whole “prayer” thing, so I’ll just send healing vibes your direction and wish you a return to full health.
I don’t know what all happens in the doctors’ heads when they do their examinations. I’m sure the neurologist here sees quite a few MS patients, so I’m assuming he’d know what to look for. And honestly, the description of the disease doesn’t really fit my symptoms. For instance, I don’t have the associated weakness or fatigue.
I’ve never had a B12 shot, but the last time my blood was checked (a couple of months ago), my B vitamins all came back within the normal range. I looked because I know B12 has been traced to psychiatric problems and other things.
I thought for sure my diagnosis was going to be Parkinson’s. I was scared about that, but I was able to draw solace in the fact that it doesn’t kill you and the younger you are when you get diagnosed, the better your prognosis. But my choreiform movements are not consistent with PD. So just because of that (and nothing else, as far as I know), they struck Parkinson’s off the differential list.
Before I left the doc’s office on Monday, I asked him to please consider my family history of schizophrenia and bipolar disorder (his response was a bunch of mumbles so I don’t know what he said). Both of these conditions are basal ganglia disorders, and both (particularly the former) are associated with bizarre movement problems. After researching the literature for almost a year now, I’ve discovered that my symptoms are very similar to what many people develop right before they enter their first episode of schizophrenia. They have physical problems in addition to the more commonly known early psychiatric symptoms (apathy, anhedonia, flat affect, racing thoughts, irritability, and social withdrawal). Women often start developing schizophrenia in their early 30s–so that would make me right on time. And interestingly, pre-morbid and morbid schizophrenics can have both dyskinisias (akathesia and chorea-like tics) and parkinisonisms even in the absence of neuroleptic medication side-effects. There are a few papers describing this phenonoma, as well as the whole concept of “schizotaxia”.
Do ya’ll think I’d come across as some kind of ass if I sent these articles to my doctors? I’m imagining their first reaction will be to deny and refute, but I don’t think my hunch is all that crazy. Or at least, it can’t be any crazier than testing me for a variant of HLD simply because I have recent African ancestry (what’s he gonna do when that comes back negative? Have me get tested for another variant? Why not do all the variants at the same time? It makes no sense!)
If I’m just a schizotaxic person, then let’s break out the Chex party mix, ya’ll! I can deal with being a little bit more eccentric than I thought I was. Actually just writing this has sealed my decision. I’m going to send copies of the relevant articles to all my doctors and let them come up with rebuttals if they choose to. If they ignore that hypothesis, fine. But that’s what I’m going to go with. That way, if a psychotic bomb does get lobbed my way, I can be prepared for it.
I can still have some hope left about my place in this world!
Thanks for being with me through this, guys. It really means a lot.
If they seem dismissive toward you regarding the articles, then you will have your answer as to finding a new doctor.
I don’t think so at all. My experience with doctors (and with people in general) is that you get more respect from them if you let them know you’re intelligent and educated.
Also, perhaps you shouldn’t be so worried about coming across as some kind of ass. I mean, you’re not going to throw a pie in the doctor’s face - you would just show him some papers and say, “have you considered this?” You have the right to participate in your own diagnosis and treatment, and are more qualified than most patients to do so. Don’t be afraid to speak up or to be a squeaky wheel.
One of the problems with depression is that it robs you of your gumption. I don’t know you well, but I suspect that if you weren’t depressed you wouldn’t hesitate to send a few papers to your doctor, nor would you put up with missionaries annoying you on the street.
monstro, I too just found this thread and want to send healing mojo your way.
Eh, doctors are human, too. They come into the room with pre-conceived notions, don’t always hear things right, and flat out make mistakes. They may think they’re Og but they put their pants one one leg at a time like the rest of us. I say this because you, and only you, are the best qualified to be your own patient advocate. You have the knowledge and skill to talk to medical professionals, don’t sell yourself short.
Please take gentle care of yourself and keep us in the loop. As odd as it may seem, we really do care about you. Until I found this message board I doubted the sincerity of people who claimed the internet could foster true feelings of community. I’ve seen this crowd rally together for over 10 years now and I believe it now.
In my experience, the professionals who aren’t scared of peer review articles are the ones worth paying for.
About a month ago I challenged my doctor’s conclusion because of something my last doctor told me. The doctor didn’t get flustered. He grinned, and proceeded to give a well thought out response explaining exactly why my previous doctor was wrong. I wanted to give the guy a hug.
The moral of the story is that good doctors enjoy being challenged. They spend countless hours trying to figure out how to make correct diagnoses, and part of that process is dealing with all opposing view points.
If you show a good doctor a study, only one of two things can happen: (1) he has seen it and already has an answer for it, or (2) he has never seen it, and now he’ll want to read it.