I want to swear and hurt someone
Posted: Tue Oct 19, 2010 8:37 pm
The last 3 years I've spent waiting, waiting to see a doctor get a test done get test results and none of those things take 3 months, it just takes 3 months for people to get around to doing them. There was the delightful 7 months I spent waiting for a replacement doctor while taking a suicide drug. Ten months to see a neurologist. Oh my god it's always waiting waiting.
Last April after 2 months of waiting to see if the hydromorphone solved all my problems (it didn't), I did a CPAP trial and waited 2 months for the results of that, which showed I needed one, so I got one (no waiting !) in June, and waited 2 months to confirm that it didn't solve my sleep problems, then I got my neurologist to make a referral to a sleep specialist, and I only had to wait one month before I saw the sleep dude, but really, since I still had a referral in to him from over 2 years previously, I can't get too excited by that.
When I saw the sleep specialist I told him everything and he said "you need another sleep study" so I started waiting another 3 months for that. MEANTIME my RLS is doing what my RLS does, which is get progressively worse at a faster rate than any of the books or papers says it should, madly wildly making a mockery of every drug I take, and I didn't know who to call about it, the neurologist who made the (second) referral to the sleep dude, or the sleep dude! But now I know the answer, it's no one! I'm not supposed to get any help from anyone until my sleep study at the end of November!!! I want so badly to throw things at them.
Until the referral, my neuro was kind enough to allow me to call his office, and he would get back to me the same day. This perhaps was in compensation for his unintentional act of evil when I first met him last Jan 27, taking me off the meds that only worked half-assed, putting me on something that didn't work at all, then vanishing for almost a month (WAIT for a month, in that state!!! Every neuron sang with the currents running through me, I danced and twisted arms and legs day and night, while crying grimacing moaning planning all my ways of dying). But now that he's referred me to the sleep specialist, he won't change my medication anymore! And the sleep specialist won't talk to me!!!!!!!!!!!!!!!!!!!!!!! His assistant/nurse/receptionsit says he says he can't do anything for me til he sees the results of my sleep study. Unf.kingbelievable! I told her "but I won't sleep! I am getting RLS every night, it's breaking through my drugs" and she said "I'll see what he says". Now I'll see if they bother to call me back.
I am supposed to be calm and rational but I can't seem to think.
Here's the story. If I can control my emotions I might call his office back? Should I? I started hydromorph contin (HM) at 9 mg last March. It was not enough so I used 9 or 12 as needed, by prescription, from Apr til Aug. But there was a clear progression going on, and by the end of Aug I was unable to get through the night with only 9 mg, and I was experiencing breakthrough RLS, which I was dealing with by either not sleeping or adding 2 leftover Percocet to my drugs. From Sep on, I have used 12 mg HM every night, used up the last of my Percocet, increased my dose to 15 mg HM 8 times (using up leftovers from when I only needed 9), plus I got through 2 and a half weeks by adding 0.125 mg of the zombie drug, pramipexole, to the 12 HM. That had to be stopped because it turned me into a zombie, so I am out of options and I have called my neuro who said to call my sleep guy who won't talk to me. Can I scream now? OK I admit it, I already did, over and over and over and it's still not enough. I want to have a life! I don't want to wait 3 months for every TINY USELESS STEP
and the sleep study is uselss because it's not going to tell him anything. The point of the SS was to see if I had anything besides RLS, to see if it was latent RLS that prevented me from getting a good sleep and made me unbearably sleepy during the day, or if there was another disorder in me. At the time I saw him, the RLS was fairly well controlled but I told him it was getting worse, and it has kept on getting worse, and now I am being overwhelmed by the symptoms and really they should be dealt with before the SS because the SS will not serve its intended purpose if not.
Sorry. I am trying to think of what I should say if I call back. And another thing that I wanted to ask him but of course I can't because he WONT TALK TO ME, how can I tell if the RLS is getting worse or if I'm getting tolerant to the HM? Can I stop the HM and use something else for a while? If my RLS is continuing to get bad fast (like how it got insanely worse over the first 2 years, so why should it stop now?) then wouldn't you think it's secondary to something, and we should find out what that something is?
I asked my GP about getting tested for celiac because my guts have been bothering me lately and she says WAIT until the sleep dude fixes you up and see if it goes away because a lot of gut problems are caused by sleep loss. I didn't say anything, I should have, the other side of the coin is, if I have celiac and it's causing the RLS, nothing the sleep dude does will help and I could wait in vain a lifetime.
I am angry and not sure what I should do. Not about the celiac, about the whole nightmare of worsening RLS and no one will talk to me about it again. I feel like when my first doctor left me.
Last April after 2 months of waiting to see if the hydromorphone solved all my problems (it didn't), I did a CPAP trial and waited 2 months for the results of that, which showed I needed one, so I got one (no waiting !) in June, and waited 2 months to confirm that it didn't solve my sleep problems, then I got my neurologist to make a referral to a sleep specialist, and I only had to wait one month before I saw the sleep dude, but really, since I still had a referral in to him from over 2 years previously, I can't get too excited by that.
When I saw the sleep specialist I told him everything and he said "you need another sleep study" so I started waiting another 3 months for that. MEANTIME my RLS is doing what my RLS does, which is get progressively worse at a faster rate than any of the books or papers says it should, madly wildly making a mockery of every drug I take, and I didn't know who to call about it, the neurologist who made the (second) referral to the sleep dude, or the sleep dude! But now I know the answer, it's no one! I'm not supposed to get any help from anyone until my sleep study at the end of November!!! I want so badly to throw things at them.
Until the referral, my neuro was kind enough to allow me to call his office, and he would get back to me the same day. This perhaps was in compensation for his unintentional act of evil when I first met him last Jan 27, taking me off the meds that only worked half-assed, putting me on something that didn't work at all, then vanishing for almost a month (WAIT for a month, in that state!!! Every neuron sang with the currents running through me, I danced and twisted arms and legs day and night, while crying grimacing moaning planning all my ways of dying). But now that he's referred me to the sleep specialist, he won't change my medication anymore! And the sleep specialist won't talk to me!!!!!!!!!!!!!!!!!!!!!!! His assistant/nurse/receptionsit says he says he can't do anything for me til he sees the results of my sleep study. Unf.kingbelievable! I told her "but I won't sleep! I am getting RLS every night, it's breaking through my drugs" and she said "I'll see what he says". Now I'll see if they bother to call me back.
I am supposed to be calm and rational but I can't seem to think.
Here's the story. If I can control my emotions I might call his office back? Should I? I started hydromorph contin (HM) at 9 mg last March. It was not enough so I used 9 or 12 as needed, by prescription, from Apr til Aug. But there was a clear progression going on, and by the end of Aug I was unable to get through the night with only 9 mg, and I was experiencing breakthrough RLS, which I was dealing with by either not sleeping or adding 2 leftover Percocet to my drugs. From Sep on, I have used 12 mg HM every night, used up the last of my Percocet, increased my dose to 15 mg HM 8 times (using up leftovers from when I only needed 9), plus I got through 2 and a half weeks by adding 0.125 mg of the zombie drug, pramipexole, to the 12 HM. That had to be stopped because it turned me into a zombie, so I am out of options and I have called my neuro who said to call my sleep guy who won't talk to me. Can I scream now? OK I admit it, I already did, over and over and over and it's still not enough. I want to have a life! I don't want to wait 3 months for every TINY USELESS STEP
and the sleep study is uselss because it's not going to tell him anything. The point of the SS was to see if I had anything besides RLS, to see if it was latent RLS that prevented me from getting a good sleep and made me unbearably sleepy during the day, or if there was another disorder in me. At the time I saw him, the RLS was fairly well controlled but I told him it was getting worse, and it has kept on getting worse, and now I am being overwhelmed by the symptoms and really they should be dealt with before the SS because the SS will not serve its intended purpose if not.
Sorry. I am trying to think of what I should say if I call back. And another thing that I wanted to ask him but of course I can't because he WONT TALK TO ME, how can I tell if the RLS is getting worse or if I'm getting tolerant to the HM? Can I stop the HM and use something else for a while? If my RLS is continuing to get bad fast (like how it got insanely worse over the first 2 years, so why should it stop now?) then wouldn't you think it's secondary to something, and we should find out what that something is?
I asked my GP about getting tested for celiac because my guts have been bothering me lately and she says WAIT until the sleep dude fixes you up and see if it goes away because a lot of gut problems are caused by sleep loss. I didn't say anything, I should have, the other side of the coin is, if I have celiac and it's causing the RLS, nothing the sleep dude does will help and I could wait in vain a lifetime.
I am angry and not sure what I should do. Not about the celiac, about the whole nightmare of worsening RLS and no one will talk to me about it again. I feel like when my first doctor left me.