We really do love you. We think you’re smart, funny, and interesting. Please listen to us. And please pick up the phone and call your sister! Won’t she see this post?
Hey Monstro,
I don’t think I’ve ever spoke to you on the Boards, but I’ve always considered you to be One Cool Sista. Hang in there. Remember what ever your diagnosis turns out to be, you’ll still need to enjoy your life as best and comfortably as you can.
Also you have the intelligence and background to work with your doctor as a peer, not just as a passive patient. Be a bit of an asshole if you have too, but be upfront and tell him not to pussyfoot around with you, and let him know if you disagree with him. Sometimes the best doctors do their best work when they are challenged by their patients instead of being hailed as a shaman/medicine man.
You are living through a medical nightmare and it sucks. But there is a way to survive this, and you will find it. People do, and you are much smarter than the average bear. It takes time, though, and patience.
I have watched others survive medical nightmares (paralysis, PD, MS, etc) and then went through my husband’s illness and death. My mom is being cared for by hospice now. Things that seem monstrous and impossible become normal. We accommodate to things that we don’t think we can. I remember posting in Rick’s online journal “A great day! Rick didn’t throw up! If you had told me a month ago that would be a great day, I wouldn’t have believed you, but it was.” The problem is, you are looking ahead without having time to accommodate. As hard as it is, just breathe for now and let yourself feel our support of you.
monstro, you know I have your back, unconditionally and eternally. There is absolutely nothing that I won’t do for you. You could kill both my cats, steal all my stuff, and treat me to a double decker, and I still will love and take care of you. Just say the word and those doctors will rue the day they dicked around with you. Because I will straighten them bastards the fuck up. And yeah, I know I sound like Scrappy Doo right now. Don’t care.
There is a ton of love on these boards, monstro. If you doubt it, search out the Santo Rugger thread, the thread where Rysdad got ripped off for a bunch of money, my own thread about mudgirl being sexually molested. . .the love. It’s here, and there are lots of dopers, so there’s plenty for you, too!
Your problem with believing in that love right now, is that you’re not feeling loving towards yourself; that’s depression, and it sucks.
I’m really very, very sorry that you’re having to endure this. Truly. I wish there were something I could do to ease your pain, even just a tiny bit.
Please take the advice of dopers who are experienced in this subject, and call whoever you need to, just to make it through the next day, three days, week, whatever.
We do love you, and as much as I’d love to see you released from your prison of pain, I would also hurt if you weren’t here.
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I was going to post that phone number that Hello Again posted. monstro - cut it out and tape it next to your phone (or if you have a cellphone, put it in your phonebook right now while you’re thinking clearly.) Put it somewhere where you can see it without having to go looking for it when you’re desperate.
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Even if your therapist is on vacation, she should have someone covering her cases for her. If you call her office, they can give you the number of the stand in therapist, who would be more than happy to help in a crisis.
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If you can’t think of anything else, call 911. They’ll stay on the phone with you and send someone to help you. If you need them - don’t worry about bothering them. They want to help you.
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As a short term-diversion, in your shoes, I would go in person to you regular neurologist’s office and explain in graphic terms how badly they screwed up and how you are not going away or lowering your voice until they fix it right now in front of you.
monstro, what about my art? You were going to sell me some of your beautiful art! I have been thinking about the pieces lately but I didn’t want to bug you because I know it takes time to make.
I still want to buy your art! But only if you feel like making it. I don’t want begrudgingly-done art … I want love art.
I love your art, and I think you’re pretty awesome too. You should call your sister BTW. Twins are special. You probably don’t realize it because you’ve always been a twin, but trust me when I say that everyone who is not a multiple is totally jealous of you.
Please ignore any posters who aren’t helpful whose username begins with “Hennessy”. Reading his post makes it clear he’s not all there. Don’t waste your time responding to negative people; it’s not worth the energy. And the guy at work, too. Tell him you’re done talking about it, and that’s that.
Things will get better. Moods change, depression can be treated, diagnoses will come. It’s a bumpy ride. People really care about you.
I’ve been following your posts throughout the past months, and they’re very interesting… but sad. Given that you have an advanced degree and/ergo far more credibility than an average patient, say to hell with it and bring up that you think you have Parkinson’s. And I agree with the above, that if the doc says “no,” ask “why not?” Being told no is better than being depressed over an unspoken possibility.
I know what you mean when you say you want to die but you don’t want to hurt anyone. On an average given day, I would prefer to never have existed in the first place (like George Bailey!). Not that feeling this way is a good thing, but maybe it helps you feel less alone to know you’re not the only one who thinks it. I would never go through with suicide because I’m too afraid of pain and I wouldn’t want to hurt my mom and sister. But I can still wish I didn’t have to put up with this shit.
Even if this shit WERE “just” a chemical imbalance (which all signs point to–>it’s not), it still makes you feel like shit. I’m sorry and I wish you didn’t feel like shit 
I just want to bump this info for the last post on the page
I’m sorry to hear of your pain, monstro. That truly sucks. Take care of yourself. I’ve been in ‘the pit’ because of depression as well, and know how much I just wanted an end to the mental and emotional pain. It was completely logical when I was in the pit. But that was distorted thinking…
And don’t smoke weed - that would probably be the worst thing for your head right now.
My mom is great, but I don’t talk to her about serious stuff much, either. Your mom is who she is, and all you can do is acknowledge it and get your support from people who can provide it (like your sister who obviously cares deeply for you).
I want you to do one thing for me - I want you to do one self-indulgent thing for yourself today, and come tell us about it. You need a little sweetness in your day.
Oh, monstro. I hope things get better. I wish I could say something more helpful but that’s all I have.
But this guy? Makes me enraged for your sake. I think you should tell him exactly what you said in your post: that if he were really your friend he would stop when you told him to stop. The first time. Repeat (as calmly as possible) every time he says anything; do not engage him or argue with him otherwise, because that just gives him a foothold. “But it’s the best time to buy!” “I’ve told you to stop talking to me about this, and if you were my friend you would respect my wishes.” “I’m not pressuring you, I’m just looking out for your best interests.” “I’ve told you to stop talking to me about this, and if you were my friend you would respect my wishes.” “But I just don’t want you to lose out!” “I’ve told you to stop talking to me about this, and if you were my friend you would respect my wishes.” Eventually he’ll either get bored or get the message. Maybe he could even get a clue about friendship…
I’m so sorry this is happening, monstro. I’ve had a couple of different “mystery illnesses”, and I know just how frustrating it is to get doctors to listen to you at times.
I loath the whole “God won’t give you anything you can’t handle” schtick. I’d be tempted to ask the person - “So if God gave this to me, what did I do to piss him off?”
From my experience, here is what I would recommend:
You have the right to get a copy of any medical test or record created. I would get copies of your recent tests and any new test you get. Also, if you take any medication, make a list of that to take with you to doctors.
Do ask the doctors if it could be this or that, and if not, why not? *
Make sure that they understand that you are much more intelligent than their normal patient.
Don’t give up (on yourself or on the doctors), and if you get a treatment, keep track of how well that treatment works. If there’s anything I wish I had done with some of my problems, it’s this.
*Amusing story - at one point I asked my internist about possibly having mono. He looked at me and told me I was “too long in the tooth” to have mono. (I was in my early/mid-forties) A few months later, rjk went to the same doctor because he was sick, and the doctor ended up diagnosing him with mono. FTR, rjk is 12 years older than I am. I enjoyed giving my doctor grief over that the next time I saw him. 
Let’s see. You’re 33, I’m 32. I was labelled with Schizoid Personality Disorder by a professional. I don’t think that’s right for me, but I definitely have ‘People Problems.’ “I want to die but I don’t want to hurt people” is practically a mantra for me, especially lately. I don’t have a neuromuscular disorder, but my dad and his sister both suffer from MS. I sympathize with what you’re going through.
Advocating that others break the law is against the rules of this board. You have managed to stay just barely on the right side of the line here – make sure you don’t cross it.
Thanks,
twickster, MPSIMS moderator
It sounds like this guy is clueless. You don’t have much energy right now to deal with this type of BS, so I think you should try to get rid of the problem as quickly as possible. You need to be very direct with him, to the point of rudeness. Something like, “Don’t talk to me about this again. If you do, I will report you to HR for harassment.” So what if you hurt his feelings? He has shown that he doesn’t care about your feelings.
I’m really sorry about your mom’s attitude towards you. I guess you can’t rely on her, but how about your sister? Can you depend on her for moral support? Does she have the same problems with your mom as you (so that you can talk to your sister about that as well as your health problems)?
Just a thought that might not even apply to what’s going on with you, ignore me if it’s already been explored. But have you ever had testing for syringomyelia, spinal arachnoid cyst and/or arachnoiditis? My cousin had many of the same non-specific symptoms you do, developing over 10 years. She underwent tons of tests with no diagnosis, developed severe depression, was often accused of being a hypochondriac, but it turns out she had an enormous bubble of synovial fluid slowly compressing her spinal cord (she had multiple cyst drainages and recoccurances, but has had a full recovery in the 8 years following a surgery that opened up a large portion of her spine to remove every last part of the cyst). This affected her physically, mentally, and emotionally in many serious ways. She was so severely affected she thought she was dying by the time she was diagnosed (no longer able to walk, barely able to think, lost most of the fine motor skills in her hands, etc).
I just thought of her suddenly and how long it took her to get an answer, figured it wouldn’t hurt to mention it.
Don’t be afraid not to be the good patient. Sometimes you have to be the pain in the ass patient to get what you need and deserve from doctors. Some doctors might resent your superior intelligence and not want to hear your ideas, but the good ones will work with you and make use of your knowledge.
Just a thought–I have had two clients who have greatly benefited from a stay at Mayo Clinic for diagnosis of a hard-to-diagnose condition. Insurance sometimes covers it.
Wow - your situation is really awful Monstro - I’m so sorry you have all this going on. Please try to hang in there - eventually you will get the answers you need. And I agree - phone the hotline if only to have someone to talk to who has no birthday party to get to, or no bible class to attend.