As cheesy as it sounds, monstro, whenever I post something here that requires a little mental processing and cleverness I’m always hoping you’ll check it out and chime in… that’s how much I respect and value your contribution to my life. I know the effect must be 100x for folks who know you IRL.
I am sending my most positive thoughts and prayers your way. Damn MDs… they really get a lot of mileage out of that label, eh? Back to the lab until they figure out what’s really going on…
Oh monstro, I’m sorry you’re going through this. And I’m angry that your wizard sees you as The Black Patient. It’s that sort of doctor who was completely baffled about what could be wrong with my mom and cousin, because although they’re WHITE they displayed symptoms similar to sickle cell. Of course, this was completely dismissed out of hand by both of their doctors because they’re WHITE and WHITE people don’t get that disease. Except another doctor finally asked, “uh, is there any chance you have some black ancestry?” and the answer is yes, yes we do - Mom’s great-grandfather/cousin’s great-great grandfather was black. Turns out that they both have a condition similar to, but milder than, sickle cell which also is rarely seen in WHITE people…but not unheard of in people who are of mixed ancestry. So… doctors who try to place people in little boxes, and then only consider diseases that other WHITE or BLACK or ASIAN people get really piss me off, especially considering what a large portion of people in the US have mixed ancestry. Certainly most black Americans have some white blood too, so things more common to Caucasians are bound to manifest in some people.
::::monstro::::
Please don’t give up yet. This wizard might not be up to snuff, but there’s someone out there with an answer for you. You just haven’t found them yet.
Hey Monstro,
I know folks are throwing possible diagnoses at you, but please write this down: CIDP. It stands for Chronic Inflammatory Demyelinating Polyneuropathy. Speak to a neurologist about it. It is similar to MS.
Have you ever had an EMG (electromyelogram)? It is a nerve conduction test. Also, have any physicians (neurologists) mentioned treatment with high-dose steroids or IV immune globulins (AKA iGgs)?
If nothing else, you should insist on getting an EMG if you have not had one.
Best of luck to you.
mmm
How are you doing, monstro?
“I can get tested for all the Huntington’d variants and there will always be another test left that the doctor can use to keep from having to do any diagnostic work.”
I know you are frustrated in the extreme. And an important component of frustration is our expectations. I don’t understand the above sentence. What is it you think the Docs should be doing that they are failing to do? I thought all those tests were ‘diagnostic work’… Maybe you also need to share with the MD what you expect to be getting that you are not?
Sometimes our last and best coping skill is just endurance. I add my best thoughts to all the others here. Hang in. A lot of us do care.
I’m doing better. Thanks so much for asking.
My therapist recommended writing a sternly worded letter addressed to all the doctors involved (including my shrink, who got this whole ball of wax started), basically laying out all the facts (how I took all those tests and did what I was told and waited all that time and drove all that way, only to be given the same evaluation that I was given before). I was in agreement about this line of attack until I called the referring neurologist’s office. They insisted they had sent in all my records. So I was confused and messed-up in the head again. Uber depressed. I didn’t want to write a letter or talk to anyone, anymore. I only ate a couple of ice cream sandwiches over the weekend because I didn’t see the point of eating anything else.
So then I saw my therapist this Monday and told her that I was totally apathetic and didn’t have enough emotion to write a sternly worded letter. Being the wonderful person she is, she did what I cannot do as a patient. She actually got through to the referring neurologist, told him what had happen and asked what was going on. And he told her. Shortly after I had finished my visit with him, the expert neurologist received my records. All except the Huntington’s test. The lab hasn’t sent that one in yet. So we’ll have to wait on that. But he wrote up a very thorough assessment nonetheless and it’s now in the hands of the referring neurologist. My therapist said he felt bad that things played out the way they did, especially with him on vacation and unable to help, and he apologized. And she said she was glad I hadn’t followed her advice and sent him an angry letter. So I guess my apathy paid off :).
So…I see him in ten days. I’m not going to go in thinking I will get a diagnosis, but at least we’ll have something to talk about.
I guess I want answers rather than more tests? The characters have changed, but I have been on this quest for over ten years, and all I’ve gotten are a list of tests to take. I could understand when the symptoms were subtle (and I saw a doctor when they were so subtle that I thought maybe I WAS being a hypochondriac). But now they are noticeable and unmaskable, fitting a pattern that MUST be recognizable by someone who’s an expert of the basal ganglia. I understand that you have to eliminate likely candidates so as not to misdiagnose, but the key word is likely. When the doctor gave me a lecture on all the different types of HDL diseases, not to mention chorea acanthocytosis and a couple of other rare genetic disorders that do not show up in my family history, I was not happy. To me, it was like he was telling me I needed to get tested for a quadrillion other things before he could tell me anything. That all the tests and neuro exams I’ve repeatedly subjected myself to over the past decade are simply not enough. I’m not an MD, but I know that’s now how medicine works. You don’t go on fishing expeditions and expect your patient to share in your academic interests while calmly waiting for what could be a death sentence. Especially when these tests are so exotic that they may not be covered by insurance.
The referring neurologist did not say, “I don’t know what you have.” He said, “You have something, but I’m going to refer you to this guy who is the expert in movement disorders and get his opinion.” This indicates to me that the referring neurologist has a hypothesis, but he needs back-up before he gives it. I don’t mind this at all, and I understand wanting to be careful. I just didn’t expect that I would see the expert and then be abruptly dismissed. I’m glad he wrote up a report and all, but damn. Based on how we parted ways, with him refusing to tell me anything substantial, it didn’t seem like he was going to write much of anything. That was my fear. But it has been allayed.
(I think I would have felt much better about my visit if he had simply said, “I need time to study your case before giving you anything solid” instead of “I can’t tell you anything because I don’t have your test results!” He had relatively good bedside manner until he had to find an excuse for why he couldn’t issue a judgment call right then and there.)
I don’t know what’s to come, ya’ll. I don’t think it’s anything life-threatening like Huntington’s, and if it is, well, I’ll worry about it when the time comes. But I’ll keep you posted whatever the outcome. And ZipperJJ, you should see something next week. I had to wait for the love to come back. 
Hey Monstro!
So glad you are doing better, and I hope you get some answers at your neuro appointment. SQUOOZLE
Please do keep us posted. I’m hoping for the best possible answer.
Here comes the guilt pangs.
I talked to my mother about everything yesterday afternoon and we got into a philosophical discussion about life. She said something to the effect that the ultimate goal in life should be happiness and I disagreed with her, telling her that I can’t imagine that ever being a realistic or attainable goal for me (it also seems like a hedonistic philosophy, but I didn’t say that to her). After some more talking, I told her that I don’t feel pleasure and haven’t experienced it in a really long time. Contentment and satisfaction, yes. But joy? No. Happiness? No. Those feelings don’t register in me anymore. I don’t feel sadness either. I’m hovering between complete nothingness (apathy) and irritation in the presence of other people’s emotions. “That is not good,” she said, and then she proclaimed that whatever it was going to take, we were going to “fix” this becase she can’t stand the thought of me not feeling joy and all of God’s blessings.
I said okay. I don’t know how I feel about her over-the-top optimism, but at least she cares.
Today, she called and said she was wanted to come up and accompany me to my neurologist’s visit (which is next week). Instantly the words came out: “I don’t want you to come.” I didn’t mean to be so blunt and I think I did a good job with damage control, but I could hear the sadness in her voice. I told her what she could do was just be available when I call her…and then I actually expressed to her the suckiness of her not sensing my need when she had to go to Bible Study a week or so ago. “But I had a commitment” she said. I replied, “You could have been a few minutes late.” “But Pastor doesn’t like when we’re late.” she said, almost in a little girl’s voice. I cut her off in a way that I rarely do.
“You are a grown woman, much older than “Pastor”. If you can’t show up to class a few minutes late to deal with family problems, then something is wrong with either him or you.”
She was silent and sad. But I felt like I had gotten a load off of my chest.
So I told her I just need her to be available when her phone rings. I don’t need her to be physically present, though I deeply appreciate her offer. My reasoning is simple: it would be added stress. I don’t need an audience to witness whatever reactions I have after the appointment. Nor do I need another “build-up”, and having my mother with me would give the appointment that OMG! THIS IS MAJORLY IMPORTANT!!! significance that I’m trying to avoid this time. She said she understood, but said that she would want someone with her at a time like this, that she was worried for me. I told her that I don’t want her to be worried, and that’s why I would do better if she stayed at home. I don’t want to have to put on an act to protect her feelings. I want to be able to scream, cuss, cry, and throw things without my mother telling me to stop and calm down (especially using “spiritual” bromides), or without watching her cry at the same time.
I didn’t feel guilt when I told her all of this, but now I do. Oh well. Delayed reaction. I hope she doesn’t take what I said personally because it’s not.
But like I said, at least she cares and she’s trying to show it. Mothers can change, I guess. I’ll get her something lovely for Mother’s Day.
Don’t feel guilty Monstro. She’s making the offer to assuage her own guilt, at least on some level. You’ve given her an opening to be more available, she doesn’t need to take over your whole life with this. It’s good she’s reached out, but she’s got to respect in reaching out that as an adult, you have your own set of boundaries that she needs to respect.
I’m sure, after she reflects on your explanation (which makes sense to me too…a visit from her would stress me out too), that she’ll understand and not take it personally. Don’t feel guilty. Send her a nice card with a line or two assuring her that you appreciate her long-distance moral support, and put the issue out of your mind.
Posting as the mother of an adult child with a number of emotional/mental issues, I can pretty much assure you that she was coming from a place of guilt. Any number of therapists, family counselors, psychologists, etc. have reassured my husband and I that we are not to blame for our daughter’s disability, that no one is to blame, much as if she were diabetic, say, I still feel guilty. I often wonder if there were anything we could have done differently that would have affected her outcome, etc.
I’m not saying any of this to make you feel guilty, only to try to help you see it from your mother’s point of view. I’m sure that what I’m going through isn’t nearly as tough as what you or my daughter are going through, but it ain’t easy!
I don’t know your mom, of course, but what I take from that is that she *did *hear you. More, she loves you and wants to support you. Problem is, she only knows one way to support you emotionally, and that’s to provide you with her physical presence. I think you did a very good job at telling her a different way that she can support you that actually feels supportive to you. That’s a hard thing to do - to tell people not just that we need them, but *how *we need them. So good job. Don’t feel guilty, you did well. 
Your mother doesn’t understand the nature of depression. She seems to think she can cheer you up with pep talks. It would help if she saw it as an illness. I don’t know whether that’s possible, considering her beliefs. Perhaps there is something she can read that would help - maybe your therapist could recommend something.
BTW, it seems inconsistent to me for a truly religious person to say that happiness is the ultimate goal in life. Do you think your mom really believes this, or is she just saying it?
It’s encouraging that you can feel contentment and satisfaction. What are some of the things that make you feel this way?
You’re right. She doesn’t understand, but I think until you’ve actually been through it, it’s kinda hard to understand. She sees me being so active–going to work every day, starting my own little side business, doing yoga, exercising, etc.–and thinks I can’t really be all that sick. She doesn’t understand that I stay active because I’m sick…because if I stop moving and distracting myself, my mind unfurls. Not all the way–I haven’t stepped into crazyland yet–but just enough for me to wonder, “Hmm, I wonder if dragging a knife across my neck will make the pounding in my head go away.”
But I think I was finally able to reach her this weekend. That’s why she went from detached concern to “OMG!!! monstro needs me!!!” I guess this is a good thing, but I don’t want her to go overboard with the worrying. But I guess that’s out of my hands.
I think she honestly means it. She believes we should all be serving God’s will too, but that joy and happiness would be rightful end-products of this. God is love. Love is beautiful and wonderful. So if you recognize this, you will be happy. I wish I could believe it, but–along with most of her religious philosophy–it seems so pie-in-the-sky. I don’t know what the “ultimate” goal in life should be, other than keeping your nose clean and perhaps making a positive impression on the world, in some shape or form. But I can’t go there with the emotions. I’m starting to realize that emotions are basically physiological in nature. You can’t “should” emotions and feelings. They just are (I sound like my therapist!) And if a person dies feeling sad or angry or whatever, does that mean they’ve “failed” at life? No. They’re entitled to those feelings, just as much as a person is entitled to being happy.
One thing that makes me feel contentment and satisfaction is when someone approaches my vending table, looks through all the offerings, takes something that they really like, and respects me enough to at least put a penny in the donation jar or come to me personally and thank me. There was a young hipster guy a couple of weeks ago who stopped by my table, picked up a big bunch vase that I had painted, and asked me, “Is it really free?” “Yes,” I told him. “Especially if you give it to someone.” He thanked me profusely, introduced himself and shook my hand, and walked away with the vase, leaving no money behind. He seemed so happy as he left, almost skipping along. Some would say he took advantage of me, but to me it was a perfect interaction. A masterpiece. Yesterday, he stopped by and said hello and slipped a dollar in the donation jar. That was nice. But I’d already been paid as far as I was concerned.
Perhaps what I felt is pleasure. I honestly do not know the difference between contentment and happiness. They seem the same to me. If there’s an emotion that’s more intense than what I felt, I don’t think I’m capable of feeling it.
I think it’s really amazing you give your work away for free. Just wanted to say that. I hope you get some answers from the doctors soon.
I’m very late to having discovered this thread, but I am fond of you as a poster and hoping very much for you to get some answers.
Monstro, I’ve said this so many times I fear it just becomes a parody but I will say it again: while I understand that nothing I can say can make it better, please know you are in my thoughts.
That’s a great story. Really beautiful. I think what you do with your art (both the art itself and the fact that you give it away) is really great.
I think it’s ok to not be happy. Suffering sucks, depression sucks, misery sucks. I think happiness is an appropriate goal in life, but there are many ways to be happy.. Contentment, satisfaction, appreciation–those are just as meaningful, just as meaning making as joyful ecstasy.
I went through the same thing, wondering at people who seem to really enjoy life, spending time in giggling, gleeful excitement. That’s a state I very rarely experience, and for a long time I felt like I was missing out. But the fact is, I like my life right now. Surely that’s happiness. I don’t particularly seek out adrenaline-filled, joyful exuberance, and I never have. But I enjoy sleeping in in the morning, reading good books, watching television. There’s no reason for me to feel guilty that I’d rather do those things than go clubbing or learn to ski. I’m not wasting my life if I don’t experience those things.
Unlike you (as I understand), I have a pretty normal sex drive, but I have had very few relationships (and not that much sex). One reason is that I don’t really pursue them. I used to wonder if that made me abnormal or meant that my life was less meaningful than people who experience “true love.”
But it doesn’t. There’s no standard for living. There’s no meaning or goal; you get eighty years or so (if you’re lucky) to do whatever you want, and nothing you do or don’t do makes it more meaningful or worthwhile or important. There’s no failure, no success, just life.
If you never experience joy, that’s ok. If you never fall in love, that’s ok. Whatever you experience is yours alone, and whatever anyone else thinks, what happens to you doesn’t really matter in the end to anyone but you. It’ll be over soon enough whether you want it to be or not, so you might as well relax and do what you want while you’re here.