I’m sorry Monstro, that totally sucks. We definitely want you to stick around, though–you’re one of the people I like to see here.
I know I’m just a bunch of pixels on your computer screen, but please add me to the list of people who would hurt if you die.
Hang in there. Breathe. One day at a time and all that bullshit. Maybe vent a little at the receptionist, bitch deserves it. :mad:
God, monstro, that sucks so much that I have no words for it. And I’ve had a lot of practice at dealing with crappy medical care.
It is NOT your fault about the medical records. Call their office and raise hell. If the assistant doesn’t call you back, then ask for the office manager. They referred you, they should have sent the records to start with. And they sure as hell should have done it after you called.
You need to flatly ask the new doctor about Parkinson’s. If he says it’s not, ask why. Doctors can be such assholes, but never forget that he is working for you. Didn’t your old neurologist think it was Huntington’s? I’ll bet he mentioned that to the new guy, so that’s what he’s looking at. You need to boot him out of that mindset and get him to look again.
I don’t remember where you are - but maybe look into research hospitals? If you don’t get any better help from this new guy, I mean. Mystery patients are kinda their specialty, y’know?
Whatever you do, don’t give up. There’s a buncha people here that would miss the hell outta you.
First off, please don’t hurt yourself. There are a lot of people on this board who know you a little bit through your writing, and while it’s not the same as being a personal friend, we still care about you and value you, and we want you to be safe.
Please also consider that the despondent feelings you’re experiencing may be depression talking. In other words, you’re not exactly yourself right now, so don’t trust the voice inside that is calling you a loser and making you feel like you want to die.
It’s also even possible that your despondency is partly a symptom of your underlying condition. Please tell your doctors about how awful your mood has been; this may be of some significance to them.
There is a class of disorders that are literally called “Huntington’s Disease-Like” (or “HDL”), because the symptoms look like Huntington’s, but the specific genetic variant that causes Huntington’s is not there. Type 2 of these does appear to be more common in the African-American community. Also, if I’m reading my link correctly, up to 8% of HDL patients present without a family history of movement disorder. So there may indeed be some rhyme and reason to what he is thinking.
Even a Wizard might still need time to determine what’s going on. I can imagine the disappointment you must be feeling now, especially after such along history of frustration. But please try not to lose hope yet; you’ve only had one visit with him so far.
Sorry you’re going through all this.
I am in no way qualified to diagnose your illness, but I do know something about depression. That you feel numb, that you don’t want to bother your mom or your sister with your problems is part of the depression. You seem to be withdrawing into a shell. Not wanting to burden your family when you’re in such pain is noble, in a way, but it can also be self-destructive. I don’t know your relationships with your mom and your sister, but if a member of my family were going through something like this I would want to help in any way I could, even if it were limited to listening to her sob over the phone. I would certainly prefer that to having a family member sob to herself in order to try to spare me.
In other words, I think you should take the risk of bumming out your mom and your sister. They’re your family. Wouldn’t you want to know if either of them were scared or in pain?
Sorry, monstro, that sounds incredibly frustrating. Just having this kind of uncertainty over something so important sounds absolutely brutal.
Don’t give up, though. I’m sure specialists like this guy are used to dealing with patients who are far less diligent than you, so he probably was expecting a visit or two to gather information and order any missing tests. Hopefully you have insurance to cover repeated visits and this isn’t all out of pocket (which would royally suck). If so, just hang in there while he figures things out. At least you are now in the hands of someone who is obviously highly respected in the field. That’s small comfort, I’m sure, but it’s something.
I did not know that you had a doctorate in Biology. That’s impressive, or I should say even more impressive, since I had already been impressed by your obvious intellect and common sense and writing ability. You’re too valuable to let your light be dimmed by this. Keep in touch, keep talking about it, and keep fighting. I hope you find the right person to sort this all out with you very soon.
Now, that’s the depression talking. You’re worth caring about, and we do.
The appointment today was one step on the journey; I wish it had been more useful, but getting a difficult diagnosis is a marathon, not a sprint. After years of stomach pain (hurts when I eat, hurts when I’m hungry), I’ve finally got a better idea of what’s going on, and I’m feeling better most days. You’re not taking “I don’t know” for an answer, and you shouldn’t.
Don’t hesitate to pamper yourself for a bit, too - do some things for sheer enjoyment, no matter how indulgent or silly they might seem.
I’ve felt the same way sometimes, yet I don’t have a mystery illness, other than “WTF is wrong with me?” Somehow, though, just asking that question is a demonstration of a will to live, and sould be heeded. Take care.
Hon, you’re one of my favorite posters on this board. I normally try my best not to get too attached to people I only know through a screen, but you rise even above that.
The only other thing I can tell you is that your emotions are lying to you. You want to get better, or you wouldn’t be doing all this. You don’t want to die. The chances of not finding anything when you have verifiable symptoms is small. And it is 100% not your fault that the doctor was not ready. I’ve dealt with that record stuff before.
You figured it out pretty quick: You’d put a lot of yourself into this day. You’re just overwhelmed and disappointed. This will pass. Listen to the advice of everyone here who cares about you. You can do this, and one day you are going glad you did.
For some reason I’ve always believed smacks across the face will serve more benefits than sweet and caring words. Maybe suicidal people are self-centered, suicide always seemed selfish to me. I’d say you can be selfish and be happy at the same time but it isn’t the easiest thing to accomplish. You’d be better off to include others in your life.
99% of the people I tell to start smoking weed never will… You may be at that point where you don’t give a damn what others say and actually smoke it though. Pay good attention to where your mind goes while high and see which emotions attach to each though. What made you happy? What made you sad? What upset you?
Every step you make (Ex: this post, therapy) towards depression only gets you closer to a dead end. You better take some steps back or start a new path. I’d break it down for you if you’d show you cared.
This doesn’t make me feel better about my health at all, but it does make me feel less confused about his going-ons about Huntington’s despite me having no family history. Thank you.
I kept telling myself that the Hungtington’s stuff was just a way to eliminate one of the two major diagnostic possibilities. “If we rule this out, then it must be this.” I thought if I got the test done, then we’d be able to not beat around the bush and get right down to the meat of the problem. If one Hungtington’s test wasn’t going to be enough, then dammit, referring neurologist! Maybe he didn’t know about all the HDL diseases, but now I’ve got to go through my insurer all over again and ask for authorization and hope I’m not charged full out-of-pocket expenses. And then hope that they don’t discriminate against me because Huntington’s is an insurer’s nightmare.
And if I do have a HDL disease…well…I don’t know what I’m going to do. I can’t imagine going to work the next day and acting like everything is fine. But I would have no choice because I don’t have enough money saved for early retirement. I’m just 33.
Suicide is selfish, but so is expecting people to endure pure hell just because you love them (the way they are now, by the way, but not the way they will be). I admire people who are brave and strong enough to watch their bodies and minds break down as others come to their aid–but I can’t imagine myself in this situation. My caretakes would be my parents. My parents don’t suck, but my mother’s attitude in the OP is actually a synopsis of her life-long attention to her me and the rest of her children. “Sorry you’re sick/unhappy/not doing well, but hey, I gotta go save the world and be some amazing yet unrecognizable Super Woman in the lives of the poor and uneducated. Call me when you’re feling better. I’ll probably call you in two weeks on my way to a movie or a fancy restuarant, in the company of others, so that we won’t be able to talk about much. In other words, I will act like I care, but stop when it’s time to enjoy my life.” When we do talk about deep stuff, she will mock me in a weak effort to bring humor to the situation or go all “spiritual” on me, telling me that God will watch over me, never gives more than I can handle, if I just Believe. It’s like she has the tracts all spread out in front of her so she’ll know exactly what to say. I have’t cried in front of her in a very long time. But I have made her cry, just for saying I disagree with her views on God.
Perhaps being a minister prevents her from accepting agnosticism from one of her own children.
Yes, I’m feeling suicidal. So slap me all you want. I don’t care. Yes, I have “people difficulty” and it’s my fault. This may be related to my physical problems, though, and I hope the doctor makes the link. But still, you can slap me over that too. Hell, you can pick up a gun and shoot me, if that will give you some satisfaction. You can’t beat up on me more than I beat up on myself. So bring it on.
It’s not helping me that I’m STILL being harrassed by that guy at work who’s always trying to get me to buy a house. He stopped just short of calling me a loser when I said I’d continue to rent for a while, at least until I can save more for a downpayment, because he bought his first house when he was 23 so why can’t I??? When I told him I was tired and wanted to be left alone about everything home-buying related, he told me to “just think about it” because this is the best time to buy. This was his message to me last year and the year before last. Fuck that. I don’t have to think about anything. I’ve got serious concerns about my neurological health weighing heavy in my mind, and he wants me to consider the tax advantages of owning a house? Fuck him with a rusted spoon. He says he’s my friend, a “big brother-like figure”, but he’ not. A friend would be sensitive to my justified concerns (like not having enough money saved? Or buying a house with a second floor, which may not be compatiable with my mobility in a few years?) and not pressure me with triviliaties that do not even affect his life. Not to mention, he would actually pretend to care about my health more than me buying a big-ass house that I will have to pour money into fixing up. So he’s not a friend. Only my sister is my friend.
Again, apologies for the verbal diarrhea. Apparently, I’ve got a lot bugging me and it comes out easier on the keyboad than out of my stuttering, stumbling mouth. Thanks for not telling me to get a lifejournal. Ya’ll are great.
Monstro, please pick up the phone and call a suicide/depression hotline. What I feel from your posts is that you really need to be able to talk to someone but don’t feel you can talk to your family. posting here is great, but there’s something about a voice at the end of the line that can be more helpful than words on a forum.
My heart goes out to you with everything you’ve been through and are continuing to go through.
monstro, you are great for many reasons, 'though especially because you use the word ‘eleventy’ - one of my favourites.
That you’re experiencing all this, and in a way that has it feel never-ending for you is something that only you know: what we ‘outsiders’ know is that you are important and loved in the real world; and a star in the virtual one.
Keep doing the best you can do. And call your sister. Eleventy hundred times if you have to. Post. It’s your thread. We all wanna know that a frustrated, and pissed off, and numb monstro is still hanging in there.
Hiya monstro,
We’ve never spoken but I wanted to stop by and see how you were doing. And since everyone speaks so highly of you, I’ll probably go off and do some lite SDMB stalking, read some posts etc.
This all BITES. While I can’t even fathom the rough time you’re having now, I do share a mother who couldn’t possibly care less. FAMLY SUCKS. And the thought of (gasp) ever having to be *dependent *on these people??? Things sucked enough growing up, no? Let’s not even think about that now, and keep in mind there is always another solution. Can you just push this bit off the plate for now?
Would it help you to write more? We’ve got Stoid over in the thread next door posting pics of her leg scabs, bless her, and folk are trying to help. We won’t have any important information, but we can listen, unlike Self-Involved Mom over there.
You’re not alone, even if it feels that way right now.
1-800-784-2433 will connect you with a certified crisis center.
There are also online live chat lines, if you prefer, find one here:
http://www.hopeline.com/gethelpnow.html
monstro, I’m so sorry for everything you’re going through. Waiting for doctors’ results sucks and it’s a pain in the ass when they confuse you while you’re already desparate for answers. I don’t know what’s going to happen any more than you do, but you have a lot of people here pulling for you. I hope things improve.
Your private messages are full.
I love you*, Monstro. Keep your head up.
*pretty sure I have never said that on a message board before!!
Monstro, I have a small inkling of what you are going through. My ex-wife suffered from numerous neurological issues. Started out with migraines, and developed into muscular disorders and limited loss of motor function. I took a leave of absence for a year from my career to stay at home and take care of her and our son.
Seems like most of our days were going to doctor after doctor, referral after referral, looking for answers. I would spend hours each night after they all went to bed, researching things online, trying to find answers. Fortunately we had pretty good insurance, so we had access to numerous specialists. She was initially diagnosed with every neurological disorder they could think of, only to rule it out with some sort of test.
Most of the doctors admitted to us that mankind’s understanding of the brain and the complications that become onset, is limited at best. We hear on the news over the last several decades of all of the advances they have made in medicine, and we come to expect, that the medical community should have all the answers. But in reality, they don’t. There is so much that is completely not understood.
Luckily for my ex, she was able to find a physician that experimented with a variety of pharmecuticals and came up with a cocktail of drugs that help fight the symptoms she was experiencing. Over time, she was able to ween her self off most of the meds and continues to live a relatively normal life.
I wish you best of luck and hope you can find the treatment you need.
Remmeber that these are very very rare, and he’s just trying to rule them out.
I second the recommendation to call a hotline. Also, call your primary care doctor and tell him or her about your mood. There may be help for how you’re feeling right now.