Saturday, September 29, 2012

Sumpin' Pithy Stolen From TW's Blog

A year ago, I was at a dinner in Amsterdam when the question came up of whether each of us loved his or her country. The German shuddered, the Dutch were equivocal, the Brit said he was "comfortable" with Britain, the expatriate American said no. And I said yes. Driving across the arid lands, the red lands, 
I wondered what it was I loved. The places, the sagebrush basins, the rivers digging themselves deep canyons through arid lands, the incomparable cloud formations of summer monsoons, the way the underside of clouds turns the same blue as the underside of a great blue heron's wings when the storm is about to break.

Beyond that, for anything you can say about the United States, you can also say the opposite: we're rootless except we're also the Hopi, who haven't moved in several centuries; we're violent except we're also the Franciscans nonviolently resisting nuclear weapons out here; we're consumers except the West is studded with visionary environmentalists...and the landscape of the West seems like the stage on which such dramas are played out, a space without boundaries, in which anything can be realized, a moral ground, out here where your shadow can stretch hundreds of feet just before sunset, where you loom large, and lonely. 
--Rebecca Solnit
Storming the Gates of Paradise

What Happened to All the Clanging Brass Balls?

Maude: You know, at one time, I used to break into pet shops to liberate the canaries. But I decided that was an idea way before its time. Zoos are full, prisons are overflowing... oh my, how the world still *dearly* loves a *cage.*


It's a gritty morning.  I need to do a dozen things, eleven of them clamoring to have been accomplished yesterday.

For once I'll spare you.  I put the Maude quote up top to get that crap out of my system.

So let me tell you about the brief visit with my Hawaiian-shirted, sandal-wearing NeuroMan on Thursday.

By the way, he continues to throw his staff under the bus for having attributed my spasticity to cerebral palsy (though Thursday, he said MS).  He further maligned this poor staffer for having ordered him an artichoke and olive pizza when what he craved -- and he is clearly a man of cravings -- was anchovies and onion.

I forgave everyone again, assuring them that there was not even the opportunity for offense being taken, at which I got the usual strange looks.

I had written out a text for him, as it was also, on Thursday morning, a gritty morning and I needed to do a dozen things, eleven of them clamoring to have been accomplished on Wednesday.  The epistolary version of my appeal to him for help began:

today's visit has several goals and i'm not leaving without answers.
just kidding.

He let me down, he really did.  He made squeaky noises about my need for specialized researchers who have been dubbed by the Queen as acceptable distributors of drugs in off-label uses.  He said, this is something that PainManagement Dood should be in charge of... or anyone... anyone ELSE.  "But I don't know enough, I don't specialize..."

Alarms, sirens, bright lights made my brain hurt.  No one knows, no one specializes, you dimwit hawaiian-shirted, sandal-wearing pseudo-cool guy!  Even the moody medico brave enough to infuse me with vast amounts of intravenous ketamine knew that.

He dared start to lift a lip in a sneer at my exposé on neuroinflammation, neuroautoimmunity, and my multimedia presentation of the DVD "Why am I still sick?" which is about biofilm infections.  If you claim not to know, if you claim to be ignorant, then don't hint at an upper lip tic when presented with information.

So I hit him squarely in the nose and kicked him where his brass balls were supposed to be a-hanging.

Brass Big Boy Nuts

Okay, I either hit him squarely in the nose and kicked him where his brass balls were supposed to be a-hanging or I said, "I need you to step up."  It amounted to the same thing.

Turns out he yammers, too.  So I told him to step up, several times.  It turns out that the thought of my good MDVIP go-to-guy doctor sets off fireworks in my verbiage.  He always steps up.  He takes the risks.  He never yammers, never makes excuses, and the goddamn Queen curtsies to him.  And he doesn't get the money the specialists get (InfectiousDisease Dood?  Oh my God, I am still getting EOBs that are clearly built on the art of upcoding) -- nowhere near.

That may have been the persuasive part -- not my anger at NeuroMan's neutered attitude, but my admiration for MDVIP go-to-guy, and my desire to protect him.

I left the office with 3-months worth of memantine [a med used for Alzheimer's that is an NMDA receptor blocker], and a prescription for dantrolene, mostly used in MS patients for spasticity.  Add that to Tuesday's Mobic, and I strong-armed my way through a fucked-up medical system with some success.  I can now predict that October will not be the month in which I succumb to suicide's sexy call.  Should there be any improvements, you, Dear Reader, will be the first to know.

Friday, September 28, 2012

More about Billy

Billy and his three grandsons


I hope Joyce, Billy's wife, doesn't mind -- I'm stealing part of her blog posted on the Dr Phil website.  I think it helps us know him better, and if you've been on the fence about donating a few dollars to their FundRazr effort, maybe this will help you make up your mind and give a little.  HERE is the LINK.

And here is Joyce:

I got Billy to eat just a little bit earlier which is better than not eating at all.

It is so hard to watch him each day knowing how much pain he has and not being able to do anything. Since August 13th when he came home from the hospital he has lost 30 more pounds so that is a total of 55 lbs.  He has had such a hard life already.  He has been abandoned by parents that should never have been parents (there were 4 kids one died of a drug overdose before I met Billy) when he was very small. Him and his brother apparently went to a foster home and orphanage (his other brother the one that passed on and his sister went to a foster home in Hickory) where his uncle found them and took them in, but from the stories I have been told Billy was alsway being thrown out due to his undiagnosed schizophrenia, so he has been homeless a lot, living on the streets and eating out of trashcans.  

He joined the Army the day he turned 18 and was stationed in Germany for a couple years. He was 22 when he was diagnosed with schizophrenia at Fort Bening, Georgia. He has been married once before to a woman that apparently was quite abusive to him. His sister said she was always calling him names and belittleing him and smacking him

One of the things I always got so mad at was him giving his money away, but his sister said he has done that all his life too. He would work (when he lived with his sister and before becoming disabled) and one time he heard this woman talking about needing money to feed her kids, he just got paid that day, cashed his check, kept a few dollars for himself and gave the rest to her. Libby said he was always like that, he would come home on payday and she would ask him about his check and he would say he gave it to someone that needed it more than he did.

Thought I would just share a little bit about him, he has his ways but for the most part he is really a good guy, always worried about everyone else, he still gives his money away although not as much. He has had a habit of giving everyone an allowence, he has to make sure Misty, Christina, Brian, Aric, Christopher and Shawna gets 10 to 20 dollars each,  every month. He even gave my brother money when he lived with us. I told him no wonder I couldnt get rid of anybody, he was paying them to live with us.  I dont fuss at him now for doing it, its his disability and as long as I can pay the bills he can give it away if he wants to.   There has been plenty of times we have had to borrow money (almost every month) the last week of the month to make it to payday and I would tell him that if he wouldnt give everything away we wouldnt have to do that, but he never listened, he would still give it away anyway.


Not 100 percent sure but Roger (Billys brother) may pay for a cremation and then me pay him some of it back, but he hasnt really said for sure.  Its not what Billy wants or deserves as a veteran (to me he deserves the full military burial he should have as A veteran) but thats just how it has to be. Since the donation thing we started hasnt been going to well (not well at all in a month we have raised 63 dollars, only 12 from the online FundRazr) we have to do what we have to do even if it means the county coroner does something with the body.

This morning, Billy finally agreed to go -- temporarily -- to the actual brick-and-mortar Hospice facility, so that they can get him stabilized on a good pain regimen, and get rid of some of the fluid plaguing him.  Also, one might make an argument for this being some timely respite for Joyce.  He will be returning home as soon as those goals are accomplished.  I've never met Billy, nor Joyce, for that matter.  She and I have played at different scenarios in our relationship -- mentor/mentee, online mutual supporters, online enemies, paranoid tag-teamers, and, finally, I think, cautious friends.

I can attest to the truth of her situation, and as someone who has been conned several times, you can put trust in that assessment.

But Billy... he's schizophrenic and I don't know what that means in any particular way.  He is becoming manipulative, emotionally, and my first reaction is, "Well, hell, the man is dying a hard death, after scrabbling through a hard life..." and other various expiations.  When Joyce was leaving to go home after they had settled him in his room at hospice, she started to close the door. Billy called out to leave it open, as he did not want to die with the door closed.

Oh... I understand Billy!  I am emotionally manipulative, calling out, and when someone risks their sanity by asking if they can help in any way?  "No, no, there's nothing anyone can do..."

Oh... I understand Billy!

Please donate what you are able -- Joyce cares not just for her husband, but really, she sees to the welfare of her mother, one of her daughters (disabled), her three (hyperactive!) grandsons, another daughter in her senior year of high school, and deals with a drug-addicted sister and brother who have an innate sense of when to strike for sympathy.  Then there are the twin daughters of the aforementioned sister, who are now also into drugs, and appear to have developed eating disorders.  

These are the kind of lives into which you'd like to deposit Mitt Romney for a long weekend, just to see what he might learn about his brothers and sisters.  Command, O Chief!

Their needs are great but I honestly believe you and I can help, as much as money can help, and prayers and intentions offered to the universe and God.


Joey Keller, Lego King of the World, Needs You RIGHT NOW

Hi all.  I went to bed worried about Joey, one of the four (okay, four "or so") pediatric cancer patients that I follow via the wonderful site CaringBridge.  You can go directly to his by clicking HERE.

His cancer, like every cancer, is a terrible one.

No, that's not true.  The first line of his "story" reads:  "Joey Keller is fighting multiple relapse medulloblastoma.."

He has one of the worst, but he has the biggest hunk of faith and derring-do that clearly comes from a slightly hyper father and a stalwart mom.  And his own joyful, humble little self, of course.  I forget sometimes how unique and -- sometimes for good -- alone these kids can be, despite the hurricane of activity whirling around them.  In their aloneness, they often develop god-sight and world-sight that puts adult vision to shame.

Such is Joey, Lego Kind of the World.

Last night, while his Dad was helping him take a bath, he suffered perhaps a stroke, perhaps a seizure, and became unresponsive.  At the hospital, he remained unresponsive, although he did begin to speak some, though what he was saying was incoherent.  He's in there, though, and that's the point.

They did a CT but really need an MRI.  He just had one recently, with fairly positive results in a very negative situation.  He has tumors of the brain and, almost more scarily, up and down his spine.

His Dad is in the allied health field (that's my impression) and is an avid amateur minister, investigator of God's promises, a tough friend to the deity.  He wears me out, frankly, and bless him for the drive to keep his Lord on his or her toes.  His Mom... she is balance, and I am sure she is sick of it.

I don't think anyone believes Joey is going to survive this cancer, and I hope his Mom and Dad won't reach through my computer screen with a wicked bitch slap.  But goodness, goodness, goodness, he deserves a conscious, peaceful death.  He deserves, they deserve, to feel connected to God, to feel that nothing has been left unsaid.

His Dad wrote, at some point during the night:  "He looks around a lot and seems like he wants to talk. We feel so bad for him. He's looking at me now, the light from hallway shining on our faces. I keep thinking my alarm clock's gonna go off, and ill wake up. or like less than 2 yrs ago, he'd walk up to the side of the bed and put his hand on our shoulders and gently rub our backs Till we woke up. This can't be real-"

So please, dearest readers, do what you do, so well, on Joey's behalf, and do it now.

UPDATE, 2 PM, 9/26/2012:  From Joey's Dad:  "Quick update. The meds needed to control Joey's seizures were stopping him from breathing. Very labored, and episodes where he would stop altogether. They moved us to ICU and intubated him for many reasons. They're gonna throw kitchen sink at stopping these seizures and on a ventilator they can't stop his breathing. Priority #1. We actually don't know if labored breathing is from the meds or the seizures. So gotta stop seizures. You know, I can't keep thoughts straight. Thx for prayers. As I get more info, I'll pass on so we all can be on same page with prayers. Thank you."

UPDATE, NOON, 9/29/2012:  "We just met with the lead ICU team, and wanted to get an update out on where we are at medically. I’ll try to remember all the details. She wanted to emphasize that the Joey we knew, with almost 100% certainty, will not be the Joey we see in the future. And without getting into all of the medical specifics, his brain has suffered so much trauma and injury, they think he won’t be at the “baseline” he was before the initial seizure in the tub. I want to mention too though, that the CT scan and EEG data don’t really show anything. They are going by the “posturing” we saw and some of the neurological deficits they see now. ALTHOUGH, they said in the first 24 hours (after incident or trauma) they always see patients getting worse. After that, we have about 4-6 days to see improvement (no guarantees of any improvement, or could see dramatic recovery, they really don’t know, medically.) They think after the first seizure, his sodium crashed and flushed fluid out of his brain, thus the posturing (and potential for brain damage/death.) This is really concerning. I was standing over him, alone, praying actually, when he went into that modeling pose and to think I was watching the fluid being flushed out of his brain, and possible assault to his brain makes me sick. SO, the fact that the CT scan and the EEG don’t show anything huge (like massive brain bleed) is a positive thing. Also, he pulls away from pain, pupils respond to light, he has been stretching, sometimes will open his eyes, heart rate goes up every time I talk to him, all are really good things. On the other hand, while the drugs he’s on are sedating, we found out, not so much that he couldn’t be waking up (over time, don’t know how much, but slightly concerned it hasn’t happened yet) pulling at the vent, irritated, etc. concerns them. But it could be too early to tell. She really didn’t know much, and we told her appreciated her saying that, other than he won’t be the same Joey we knew…but didn’t say what that would look like etc. Physically? Mentally? Or to what extent we would see those deficits."

Wednesday, September 26, 2012

I'm pretty sure I don't have cerebral palsy, YAY!

Here I sit, stuck.  Playing Taylor's "It's enough to be moving on..." in alternation with "Pancho and Lefty" by my dear, dear Townes Van Zandt.  I confess to an interlude by one of Dylan's worst.  Nope, not gonna admit which one.  Take a guess, why doncha?

Blue?  Clinically depressed?  I can tell you that in the second case, one gives a royal damn about the label.

Yesterday was spent freaking out a nurse practitioner who then called in my least favorite physician in the world, so that they could "upcode" my visit, I'm sure, to some ungodly ka-ching ka-ching cost that my Obamacare-inspired PCIP insurance coverage will pay without blinking a governmental eye.

He creeped up behind me, addressed me, as a vet might announce himself to a mildly feral kitten -- which is when I was able to add something to my list of why I don't like him:  He sounds like a girl pretending to be a boy who is sensitive and therefore, in his coiffed world, immediately likeable.

All he wants to do, he girl-whispers, is listen to my lungs and heart.  Ten seconds, tops.  The NP feels better,  now that he is of the opinion that I am not dying on the premises.  The entire ten seconds, he has his free hand pushing down on my left shoulder.  Wait! Isn't there something wrong in my presentation?  Right!  Now I remember!  I don't have a freaking left shoulder anymore, so that ten seconds was excruciating and I used it to explain my heart rate of 124.

"Oh, I am so sorry," s/he almost lisps, as s/he pats me on the freaking same spot.  He doesn't know that I know that he wears what must be a very elaborate hair piece.  I'm saving that for the day I really need it.

He's the PainManagement Dood, last highlighted in this blog, I believe, with this post, "The Cash Cow Blues."

You unsympathetic types out there are sniffing, muttering, "Well, why don't you just change doctors?" Well, welcome to the War on Drugs.  I am at the stage of CRPS (and, I reckon, chronic osteomyelitis) where pharmacological management is all that's left.  "Quality of life is what matters now," is how the NP neatly put it yesterday.

I found two great pain management practices and neither would take me on because I was solely managed by medication and would not require (nor allow) "procedures."  That's code word, usually, for sympathetic block upon sympathetic block, which I have done, and done, and done, to no avail.  So it's chichi toupéed pain management dood or no one.

But I like this new NP.  She thinks I'm reasonable.

Did I tell you that they drug tested me last visit?  And ushered me into a non-accessible to the wheelchaired-in-extreme-pain restroom for the Big Pee?  It was a riot.  I dropped the cup several times on the floor, praying that no one had sprinkled their cocaine on those questionable spots.

Great news:  "We found nothing in your tox screen except what we expected to find." Yay!  She reminds me that they do this every three months.  I tell her that's interesting, because that was my first drug test in 10 years.  She said, "I wondered how you were going to get along in that bathroom." I cracked my crack joke and she did not smile.

Anyway, we took one drug away, and added another that is very similar but less likely to make me suddenly bleed out, and, as I said, we established that using these more dangerous drugs is okay because everyone and their third cousins are in agreement that I have no more treatment options and that the goal, now, as approved by all the half-step-siblings, is "quality of life."  Unbelievably, these people actually shorten it to QOL.  Seems like an obscenity.

The reason the NP thought I was dying in her office?  Hypoglycemia.  Another side effect of the drug we eliminated.  Also possibly due to taking insulin and forgetting to eat.  So Fred was running down to the pharmacy to buy candy and I was raiding the treat jar they keep at the office check-out counter.  I couldn't explain myself, so I am sure the new employee on the other side of the desk thought me, at least, ill-mannered, as I grabbed one piece of hard candy after another.  Then she watches as Fred lopes in, breathless, and throws a chocolate bar at me and lobs over an orange juice.  She did great.  Smiled politely, as if being blitzkrieged by sugar fanatics was all in a day's work.  As soon as I could speak, I mumbled "blood sugar," and she added a nod to her smile.

Of course, now I realize that she was on the phone the whole time, having an earpiece 'n all.

I have treated myself to two things, even though I am also doing a Practice Lent.  I broke my café presse several weeks ago and have been living on coffee dripdripdripped through a Melitta filter.  Here's my thinking.  I am wasting coffee, as I require it very strong and the drip method needs a hunka-hunka coffee to make that happen.  So... ha!  Discover Card had its way with me.  They've made it possible to link your Bonus Points/$ to Amazon.  And that amount paid for my new La Cafetière café presse.  The goal now is not to break this one.

The second thing?  Nothing spectacular -- but we've found a brand of muesli that we like a lot, that is sold in bulk at Amazon, on the cheap, and is delivered to the front door.

Carbon footprint?  What carbon footprint?

If you knew me, if you knew me NOW, you'd be asking, "Hey, prof, what has got you so nervous that you're mired in all this minutia?" Well, smarty-panted Reader, I am to see the neurologist tomorrow, the famed hawaiin-shirted, always-sandled neurologist, who sometimes cries.  If he cries tomorrow, I am going to slug him right in the nose.

On this day of Small Anecdote, another one to bolster your faith in the medical system:  The nurse who called me this morning about tomorrow's neuro appointment said the good doctor needed to know if I thought my spasming was due to my cerebral palsy.

So my greatest joy thus far, and which shall buoy me through every suicidal moment of this day, was my immediate and assertive (not aggressive) response:  "I'm pretty sure I don't have cerebral palsy!"

Yay, me!

(Please excuse me, all of you who DO have cerebral palsy.  I'm classless, tasteless.)

She called back about 5 minutes later to apologize profusely, emphasizing that the doctor did, indeed, know whom I was as well as my "disease processes."  Her voice sounded all red and insecure.  I felt like saying they could diagnose me with leprosy, I don't care, so long as they treat the CRPS dystonia along the way.

"It's enough to be movin' on..."  Muesli, anyone?  How about a cuppa joe?


Monday, September 24, 2012

more reasons to hang on to a good doctor

i've been meaning to write but things have been extraordinarily rough.  this morning, i forced myself to take care of some business, financial, medical, and the spots on the kitchen floor.  that kind of thing.

also, chasing one buddy the freakishly large kitten who had what we politely call a "cling-on," a game that he found hilarious, but which induced need of a nap in me.  the expedition was a success, i am glad to say, and buddy is now allowed back on the bed...  where his twitching, dreaming self suggests that he is reliving the fun of ridding his derrrière of stray matter.  his huge paws are twitching...

there have been many mentions in this blog of my MDVIP go-to-guy.  at my most destitute, i came up with the money to keep him as the center of my medical "team." he's just that good.  you can read about MDVIP HERE.  i cannot vouch for anyone save my guy, of course.  there are some things about the system that i still don't understand, but that's about average for me, and probably won't be an issue for smarty-panted old you, dear reader.

but i ask you, how many of you have doctors that would field an email such as this one, that i just fired off?  he's told me that he lacks time for extra research into biofilm infections and -- like everyone -- is stymied by my extensive CRPS.  that said, he's asked me to forward to him references and my "takes" on journal articles that my astute judgment deem possible sources of actual action.

gracious?  the man is gracious -- even if it is mostly the epitome of a polite and sympathetic blow-off.

this morning's email:

need order for annual echo + med adjustment + consideration for more medication adventures
2:15 PM (18 minutes ago)

to X, X  bcc: me


since insurance is at 100% coverage, i thought i would try to knock off any annual testing before the end of 2012.

  • the most important thing to me is the annual echo. i called dr. w's office and they require dr. MDVIP's referral/order.  would you please ask them to call me to schedule the appointment? 

i also just pre-ordered most of my meds for the rest of the year, some rx have expired or need renewal, so i apologize in advance for the flurry of faxes that will be coming your way.  

  • through experimentation, i've come to believe that taking two 200 mg generic plaquenil helps with bone pain better than just one.  if it is okay with you (and please pardon the experimentation), could the rx be changed to that dose amount?  i have never tried MORE than 400/day... ?  anyway, this is the rx#  if you want me to stick to 200 mg/day, i surely will, in which case no changes are required at medco.   200MG  Rx# X

things are pretty miserable around here, mostly due to pain, spasm, fever, sweats, no sleep or too much -- otherwise known as "the usual"!  

  • before the end of the year, i'd like to have my blood rechecked, if that makes sense, including sed rate and c-reactive protein.  i won't be returning to infectious disease dood who usually does the blood work as a matter of course.  would/could you order through quest, as there is one near our manor.

a piece of confidential health care cost gossip?  infectious disease dood's office has garnered over $275,000 since JANUARY.  can you say "wretched excess"? i know the drugs are expensive... but, please...

i am trying to do the groundwork on biofilm infections but have trouble concentrating and most of the info stresses the wonders of prevention, and the best ways to identify bugs from implanted devices (once removed) -- which is all irritating to someone who is on the other side of the thing.

  • i am very interested in trying "drugs that work through TNF-alpha blockade" -- as there are many abstracts out there pushing for more studies of these biologics in CRPS -- going after the inflammation, i guess.  i am ready to skip the studies and go right to giving something an "off-label" try.  or maybe something like enbrel/remicade/humira wouldn't even need to be "off-label"?  how's about thalidomide?  i am wondering if my insurance would be suitably impressed just by a history of my c-reactive protein scores as justification... that'd knock their insurance socks off!
  • i am also wondering if it is worth restarting "bisphosphonate-type compounds such as calcitonin, clodronate, and alendronate" -- which we stopped because i had been on them so long. i've been off of them for well over a year now.  if yes, and they're all pretty much the same, my preference is for the cheapest! i'm doing my best not to bankrupt the country, though clearly, it is too late.
  • if we scratch off methadone and ketamine, there are still some NMDA receptor antagonists i haven't ingested, namely amantadine, memantine, dextromethorphan (did you suggest this to me once?).  the discussions (anecdotal patient message boards) i've seen for dextromethorphan have a huge range of doses, but all recommend "compounded" versions rather than OTC which has alcohol in it.  amantadine seems to be used for neuropathic pain pretty frequently...  memantine's best study included a huge cohort of three patients, so i dunno... you gotta love the investment big pharma is making into CRPS.

Clin J Pain. 2006 Jun;22(5):425-9.
Pharmacologic management of complex regional pain syndrome.
Rowbotham MC.
UCSF Pain Clinical Research Center, Departments of Neurology and Anesthesia, University of California, San Francisco, School of Medicine, USA.

Few randomized controlled trials of oral pharmacotherapy have been performed in patients with complex regional pain syndrome (CRPS). The prevalence of CRPS is uncertain. Severe and advanced cases of CRPS are easily recognized but difficult to treat and constitute a minority compared with those who meet minimum criteria for the diagnosis. Unsettled disability or liability claims limit pharmaceutical industry interest in the disorder. Many studies are small or anecdotal, or are reported on only via posters at meetings. Targeting the process of bone resorption with bisphosphonate-type compounds such as calcitonin, clodronate, and alendronate has shown efficacy in three published randomized controlled trials. Intravenous phentolamine has been studied both alone and in comparison to intravenous regional blockade or stellate ganglion block. Steroids continue to be administered by multiple routes without large-scale placebo-controlled trials. Topical medications have received little attention. There has been considerable interest in the use of thalidomide and TNF-alpha blockers for CRPS, but no published controlled trials as of yet. Numerous other oral drugs, including muscle relaxants, benzodiazepines, antidepressants, anticonvulsants, and opioids, have been reported on anecdotally. Some therapies have been the subject of early controlled studies, without subsequent follow-up (eg, ketanserin) or without an analogous well-tolerated and equally effective oral treatment (eg, intravenous ketamine). Gabapentin, tricyclic antidepressants, and opioids have been proven effective for chronic pain in disorders other than CRPS. Each has shown a broad enough spectrum of analgesic activity to be cautiously recommended for treatment of CRPS until adequate randomized controlled trials settle the issue. The relative benefit of oral medications compared with the widely used treatments of intensive physical therapy, nerve blocks, sympathectomy, intraspinally administered drugs, and neuromodulatory therapies (eg, spinal cord stimulation) remains uncertain. In summary, treatment of CRPS has received insufficient study and remains largely empirical.

your natural reaction will be that some specialist somewhere should look into all this and do any prescribing.  excuse me while i giggle, because there just aren't any brave souls lining up to help.  i am going to try to make an appointment with the hawaiian-shirted neuro-guy , but am pretty sure he no longer wants to deal with me, either. this may seem an odd complaint, but he tends to over-medicate me...

sorry to cram so much into one email.  please take your time responding, there is no rush (except for scheduling the echo and correcting the plaquenil, if that's okay).  and if you ever want to charge me for an office visit as part of dealing with such an email, i'm good with that, you brave, brave doctor man.

take care,