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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

available "cures" for acute CRPS - requiring only $$$ for large studies

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Unread 12-01-2012, 08:09 AM   #1
fmichael
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Default available "cures" for acute CRPS - requiring only $$$ for large studies

The long and the short of it is that one or more "cures" for acute CRPS/RSD are already well established for people in the early or "acute" stages of the illness: roughly speaking within four to six months of the onset of symptoms. But overcoming the substantial inertia that may stymie their implementation is another matter.

While neither (or any of the three, depending on how you look at it) of these treatments not currently available, in one case, that is true only as to the U.S. civilian population. Two, small and well written articles set the stage nicely:
A unique presentation of complex regional pain syndrome type I treated with a continuous sciatic peripheral nerve block and parenteral ketamine infusion: a case report, Everett A, Mclean B, Plunkett A, Buckenmaier C, Pain Med. 2009 Sep;10(6):1136-9. Epub 2009 Sep 9; and

Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1
, Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M, Int Anesth Res Soc. 2007;105(4):1148-1151.
The articles are important for two very different reasons. As to the first, Col. Chester 'Trip' Buckenmaier, III, USAF, is one of our great unsung champions. As a newly-minted anesthesiologist at Walter Reed, c. 2001, then-Captain Buckenmaier persuaded his superiors to allow him to take what was then a new and exciting clinical fellowship at Duke, in continuous regional anesthesia (CRA). And when the Iraq War started, he was on one of the first planes out, with his bags filled with as many pumps and bags of lidocaine as he could carry. See, e.g., Doctor Recalls First Battlefield Use of Regional Anesthesia in Iraq, Rudi Williams, American Forces Press Service, May 25, 2004. Very long story short, it is because of his work that it is TBI and not CRPS that has become the defining war-related injury of the last decade.

So flash forward to 2008, a 17 year-old incoming West Point cadet twists her ankle during basic training, and a week later she's diagnosed with suspected CRPS. And let me stop right here and say that the one thing that's unique about military medicine in the U.S. - especially as to service academy cadets - is that it values the DOD's investment in human capital. (And what a shockingly foreign concept that is to those who do not have the benefit of a "single payer system.") In any event, she's tossed into a helicopter, and flown to Walter Reed, where she's rushed to ICU and hooked up simultaneously with CRA and a ketamine infusion for good measure. 5 days later she's discharged, recovered, and six months later was training for marathons. Her doctors then publish the case report lamenting about the difference in the standard of care with the civilian sector. But they may yet have the last laugh, where they are in the middle of a Dept. of Veterans Affairs funded study comparing the outcomes among some 500 wounded service personnel, grouped by matching pairs as to age, nature of injury, etc., controlling for everything except whether the patient received CRA, and on that each of the pairs are split down the middle, looking for the onset of complications, primarily CRPS.

The study is so large it's being run out of three of the largest military hospitals in the country, and when it concludes, it will have the statistical power to allow its authors to exert some leverage over the entrenched interests in the civilian medical sector. And hopefully I will not be seen as speaking out of turn if I say that it is, after all, a culture which appears to value CRA really as a prophylactic for surgeons, as opposed to -say - Duke's Pain Management Center, in the same Dept. of Anesthesiology - which does not offer CRA to anyone whomsoever who walks/limps in off the street Dare I even suggest that it might have something to do with not wishing to dry up their business? . . . All I know is that repeated calls on my part to Duke's Pain Management Center - seeking clarification as to why CRA was not among the available treatments listed on its website - were not returned. That, and that and I understand that CRA is currently the treatment of choice in France and Germany - the latter in particular - for suspected cases of CRPS, within days on the onset of symptoms.

The second article is of interest because it ties in so well to what is now known of the acute stage, a world of neuro-autoimmune disorder. See, e.g.,
Autoimmunity in Complex-Regional Pain Syndrome, Blaes F, Tschernatsch M, Braeu MD et al., Ann. N.Y. Acad. Sci.2007;1107: 168–173; and, Autoantibodies in complex regional pain syndrome bind to a differentiation-dependent neuronal surface autoantigen, Kohr D, Tschernatsch M, Schmitz et al, PAIN 2009; 143:246–251.

And at least as far as "Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody, etc." is concerned, I don't see anything more nefarious at play than the sad state of funding for biomedical research in the United States: even though at least 10% of the adult population suffers from some form of a chronic pain condition, in - I believe - 2010 the total amount spent on pain studies of any kind represented only 0.6% of the grants awarded by the NIH. And there's a strait forward explanation: due to the ever shrinking budget for all things science in the federal budget (and next year looks like the worst since the Soviet's launched Sputnik) the NIH tends to favor studies with matching industry money. And therein lies the rub: private dollars will be spent only on those drugs and devices that still have a healthy patent life. In one "swell foop" that takes care of infusions of any kind with generic anesthetics: whether ketamine infusions or continuous regional anesthesia.

To put this in focus, I've put the following and admittedly absurd scenario to a number of doctors in academic medical practice: Imagine that there are 100 published case reports and small studies showing complete cures in patients with severe psoriasis who took a Nembutal and then removed all their clothes and walked around naked for two hours every night on either side of Midnight [Standard Time] for the five nights straddling the full moon, during each of the three months straddling the summer solstice, would the NIH fund a study of 400 - 500 matched pairs of subjects, where one of the two took the barbiturate and the other a placebo. And in my under-powered and non-randomized survey, I got only one answer. No.

And studies with even brand new TNF[a]-antibodies are unlikely to receive as much as a donation of enough medication to run a study. Why? Because the idea of independent researchers running a study with any statistical value on a drug that's already been approved for release is fundamentally abhorrent; if significant side-effects in populations of "real patients," including those with "co-morbid" conditions that might have been excluded or at the least "minimized" in earlier industry-sponsored studies, then that information would have to work its way into the FDA-approved "prescribing information." Indeed, "after-market" information of this sort has resulted in the recall of medications for as long as the FDA has had jurisdiction over the use and distribution of prescription drugs. Why risk a good thing when the potential upside to the manufacturer would be a trivial amount of sales in a minor sub-market? Or so my physicians have explained the problem to me, in one case when all that was sought was a small supply of an otherwise relatively expensive drug.

Further complicating the issue is the role of for-profit insurance companies, who have become accustomed to very large, double-blind multi-center Phase III testing, before large pharmaceutical firms (Big Parma) finally gets FDA approval to market a drug that has cost $1B or more to bring to bring to market. And of that, according to a recent report of Forbes, over 90% of the total development cost can be in Phase III (final) testing alone! Enter the for-profit medical insurance companies, and suddenly it's very easy to deny coverage for a procedure that might require a week's hospitalization, sometimes utilizing an ICU. All it takes is to adopt the position that they will approve only those procedures supported by the "best medical evidence," which means the equivalence of Phase III resting, even if the drug at issue has long been approved by the FDA for other uses. And if the money isn't there to do the large scale testing these standards mandate, gosh, that's too bad. See, generally, Evidence-based medicine -Wikipedia article , at Section 6, Limitations and criticism.

All that said, I have to hope that the work of Drs. Buckenmaier et al, will pay off and be published in a major journal, such as Pain, and will have the effect of bringing the civilian practice of pain medicine in the U.S., notwithstanding their kicking and screaming, at last into the 21st Century, and on account of which, fresh cases of CRPS will gradually atop entering the system. At which point, the remaining attention of CRPS practitioners will necessary be focused on the remaining patient, with “old and cold” cases. And how that will be accomplished is necessarily the subject of later threads. That said, at least over the next decade, my guess is that the greatest amount of progress will be made in the fields of neuromodulation, but that remains to be seen.

Mike
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Last edited by fmichael; 12-01-2012 at 01:54 PM. Reason: corrected my use of Roman Nos. in penult. para. (strange but true)
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Unread 12-01-2012, 03:51 PM   #2
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Hi Mike!

This is all very interesting. I have a quick question: if someone with CRPS goes into remission for a period of time (about a year) and comes out of it, would the resulting neurological condition be more similar to "fresh" CRPS or "old and cold"... i.e. if you went into remission and came out of it would these acute treatments offer the potential of a cure in the same way that they would to people who literally just started showing signs of CRPS?

Thanks for all this information! Your hard work is much appreciated!
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Unread 12-01-2012, 06:53 PM   #3
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Originally Posted by cja1 View Post
Hi Mike!

This is all very interesting. I have a quick question: if someone with CRPS goes into remission for a period of time (about a year) and comes out of it, would the resulting neurological condition be more similar to "fresh" CRPS or "old and cold"... i.e. if you went into remission and came out of it would these acute treatments offer the potential of a cure in the same way that they would to people who literally just started showing signs of CRPS?

Thanks for all this information! Your hard work is much appreciated!
Good question. If the CRPS returns after a new injury of some sort, then I'm pretty sure it's a fresh or "acute" case of CRPS in its own right. As would be the "spread" of CRPS in such circumstances, where a good argument can be made that each case of "spread" secondary to a new injury, is in fact a fresh immune-modulated case of CRPS, on account of which treatments that may have long since lost their effectiveness, such as nerve blocks delivered under fluoroscopy - may have a new lease on life with respect to combating injury-induced spread.

For the complete treatment of whatever it is I happen to know on the subject, including links and citations to some articles of interest, please check out my post from February of this year - "a few quick points on spread" - in the t.D.C.S. Update Could remission be within my reach and your's too? thread, which appears as Post No. 145.

But as to a re-occurrence independent of any injury, I don't know. One way to find out (and treat it should the response be positive) would be if it responded to a nerve block within three months of the re-occurrence. If so, it would be a fresh case, not unlike those reports of CRPS independent of any known injury. Alternatively, a rheumatologist's blood test for TNF-[alpha] and its soluble Receptors I/II should be close to dispositive if performed within six months of symptom re-occurrence. See, Systemic inflammatory mediators in post-traumatic complex regional pain syndrome (CRPS I) - longitudinal investigations and differences to control groups, Schinkel C, Scherens A, Köller M, Roellecke G, Muhr G, Maier C, Eur J Med Res. 2009 Mar 17;14(3):130-5 [ABSTRACT]. This study is important because it found a significant difference in these serum levels (among others) (p = 0.01) in the same patients, from the time their cases were "acute" (defined as being within 6 months of symptom onset) as opposed to when they had become "chronic" (remarkably in the relatively narrow band of only 6 - 12 months from onset).

(And while I'm sorry there isn't a link to the full text of the Schinkel article - which a friend pulled for me - I will be happy to send on a copy of the PDF to anyone who drops me a PM with an email address.)

I hope this is useful.

Mike
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Last edited by fmichael; 12-02-2012 at 01:15 AM. Reason: link to Wiki article on TNF-α and clarify results of study by Schinkel et al
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Unread 12-02-2012, 01:44 AM   #4
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If you want the dollars then help with this sign all the petitions and spread it to as many as possible

Worldwide Awareness Campaign Please Help

There may be as many as 106 million un/misdaignosed suffers of the Worlds Most Painful incurable condition so people and sites from around the world are coming together to turn November 2013 into International RSD Awareness Month, currently only America has a National Awareness Month.
Please spare 5 1/2 mins to watch this video but be aware you may find some of the images disturbing.
http://www.youtube.com/watch?v=MviVcjWZDts
it is vital that you watch it to the end
If you are newly diagnosed I strongly suggest you do not watch it.
If you live in the UK please sign http://epetitions.direct.gov.uk/petitions/31344
E-mail the link to your MP asking why since being informed on 30/10/2010 David Cameron, Nick Clegg and The DOH have refused to do anything about the situation.
You can also send it to some members of the House of Lords.
http://www.parliament.uk/mps-lords-and-offices/lords/
No matter where you live in the world can you please sign here http://www.pledgebank.com/RSDCRPS
http://you.38degrees.org.uk/petition...eness-campaign
http://www.thepetitionsite.com/460/1...ness-campaign/
http://www.change.org/en-GB/petition...ross-the-world
http://www.ipetitions.com/petition/w...ness-campaign/
http://www.gopetition.com/petitions/...-campaign.html
http://www.activism.com/en_GB/petiti...campaign/40439
http://www.causes.com/causes/800617-...ctions/1700679
http://www.petitionbuzz.com/petitions/worldwidersdcrps
http://www.petitiononline.com/RSDCRPS1/petition.html
http://www.communityrun.org/petition...ess-campaign-1
https://petitions.whitehouse.gov/pet...rable/SFkd2cS6

If you live in another Country can you start your own petition and send the link to your own Politicians
If you are willing to commit to spending 15mins a day for 4 weeks then 15mins a week to help spread this then please e-mail me on.
RSDFighter@hotmail.co.uk or join me on facebook
Kevin
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Unread 12-02-2012, 05:42 PM   #5
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Hi Mike!

Thanks for the response! It's actually my girlfriend who has CRPS and I am looking all over for the best ways to treat this horrible condition. She came out of a year long remission last May and is scheduled for a 5 day ICU Ketamine infusion in mid January. Unfortunately, this will be about 9 months after she came out of remission... she did have a 4 day high does Ketamine infusion in late June with Dr. Kirkpatrick, but it only stuck for a few weeks. Is it feasible to push the hospital to include CRA with the upcoming ketamine infusion since she'll be in ICU anyway? Will this be too late given that she came out of remission 7 months ago now (9 by the time of the infusion?) Furthermore, is there any way to keep the CRPS in the fresh stage until then?

Sorry for all the questions, but I just joined this forum and for some reason am not enabled to PM you!

Thanks so much! I greatly appreciate all your helpful information!
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Unread 12-02-2012, 09:44 PM   #6
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Originally Posted by cja1 View Post
Hi Mike!

Thanks for the response! It's actually my girlfriend who has CRPS and I am looking all over for the best ways to treat this horrible condition. She came out of a year long remission last May and is scheduled for a 5 day ICU Ketamine infusion in mid January. Unfortunately, this will be about 9 months after she came out of remission... she did have a 4 day high does Ketamine infusion in late June with Dr. Kirkpatrick, but it only stuck for a few weeks. Is it feasible to push the hospital to include CRA with the upcoming ketamine infusion since she'll be in ICU anyway? Will this be too late given that she came out of remission 7 months ago now (9 by the time of the infusion?) Furthermore, is there any way to keep the CRPS in the fresh stage until then?

Sorry for all the questions, but I just joined this forum and for some reason am not enabled to PM you!

Thanks so much! I greatly appreciate all your helpful information!
I'm thrilled that your girlfriend is getting to see Dr. Kirkpatrick.

As to your question, the only reference I've seen to using CRA in conjunction with ketamine infusions (sort of a belt and suspenders approach) is in the report I referred to out of Walter Reed. That said, I couldn't think of anyone better to ask than Dr. Kirkpatrick! Just an idea, but maybe you guys want to send him a letter/email referencing the study - but not enclosing it were rest assured he knows about it and the last thing you want to do his come off sounding patronizing - and ask what he thinks about it. (In any event, that's how I'd handle it.)

Good luck! (And keep us posted,)

Mike
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Unread 12-02-2012, 10:40 PM   #7
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Hi Mike!

Actually, she already went to Dr. Kirkpatrick (several times actually). We're headed up to Philly for a 5 day infusion with Dr. Aradillas in Dr. Schwartzmann's group. I'm assuming he will know about it as well, but I'm definitely going to ask (especially if you think so highly of it to call it a possible "cure"). Should I also ask about the TNF-alpha blocker? In addition, she's going up soon to Dr. Fugedy in Atlanta for tCDS. I know people on this board have talked about tCDS minimizing spread (I read that whole thread)... would this be equivalent to keeping it in the acute stage potentially holding it there until we can get the effective acute stage therapies?

I will keep you posted! Thanks for all your help!
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Unread 12-02-2012, 11:03 PM   #8
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Hi Mike!

Oops, sorry if I misspoke, she's actually headed up to Philly this time (she's gone to Dr. K several times and we're trying the 5 day continuous IV this time rather than the 3-4 day high dose one that Dr. K does). We're going to Dr. Aradillas who is in Dr. Schwartzman's group. Do you think it'd be worth asking about the TNF-alpha blockers as well? In addition, she's headed to Atlanta soon to see Dr. Fugedy for tCDS. I've read the whole thread about it here and am hoping that this can keep her in the acute phase (is that possible?) until the ketamine treatment (and possible CRA). Are the kind of results you noted for people who get this treatment very close to the onset of symptoms (like the cadet in the article) possible for my girlfriend 8 months out of remission? Could tCDS hold the development of CRPS to maximize benefit?

Thanks and we'll keep you posted! I really appreciate all your information!


As to your question, the only reference I've seen to using CRA in conjunction with ketamine infusions (sort of a belt and suspenders approach) is in the report I referred to out of Walter Reed. That said, I couldn't think of anyone better to ask than Dr. Kirkpatrick! Just an idea, but maybe you guys want to send him a letter/email referencing the study - but not enclosing it were rest assured he knows about it and the last thing you want to do his come off sounding patronizing - and ask what he thinks about it. (In any event, that's how I'd handle it.)

Good luck! (And keep us posted,)

Mike[/quote]
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Unread 12-03-2012, 09:15 AM   #9
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Do you think it'd be worth asking about the TNF-alpha blockers as well?
When I was in school, I was taught that the first rule of statutory interpretation was "read." The second rule was "read on."

In thinking about the first question you raise, I went back to my copy of Systemic inflammatory mediators in post-traumatic complex regional pain syndrome (CRPS I) - longitudinal investigations and differences to control groups, Schinkel C, Scherens A, Köller M, Roellecke G, Muhr G, Maier C, Eur J Med Res. 2009 Mar 17;14(3):130-5 [ABSTRACT].

Let's just say it set me back. I had relied on the abstract for close to three years - where the full-text journal only recently becoming available to the respective online university libraries of USC and UCLA - and had not previously picked up on cautionary language from the article that wasn't included in the abstract's remarkably detailed statement of the authors' findings. Possibly because that cautionary language was inserted as part of the editorial process, while the authors' abstract was allowed to go through unscathed. In any event, it became obvious to me that, although I had looked over the PDF when I got it on July 30th, I hadn't looked closely enough, and continued to rely on the literal language of the abstract, for which I can offer no real justification. In any event, the relevant language from p. 134 is as follows:
Up to now the results on systemic inflammatory cytokine responses are very inconsistent and vary between the different study populations and settings. High intra- and interindividual variations were shown in our studies. There is no clinical relevance proven so far that measurement of plasma cytokines is helpful in diagnostic or follow-up of patients with CRPS I.

* * *
Recent studies have proven local involvement of inflammatory mediators, where as systemic responses are very inconsistent which might be due to irregular occurring systemic overspill of local mediators. A clear correlation between acute or chronic stages of disease and systemic inflammatory mediators is not yet shown. This holds true especially if those groups are compared to healthy controls, patients with forearm fractures or neuralgia.

Further studies on local inflammatory responses will elucidate the role of inflammatory components in the pathogenesis of CRPS I. Additional larger longitudinal studies in patients and relevant control groups are warranted before any clinical use for diagnostics or follow-up can be recommended.[Emphasis added.]
As such, my earlier speculation that someone looking to see if they might have a "fresh case" of CRPS might be able to rely on diagnostic testing of those cytokines for which the FDA has approved diagnostic testing in the first place, say, TNF-[alpha] antibodies for Crone's Disease, was at best premature.

Then too, although the rheumatologist who initially suggested my CRPS Dx in 2001 raised on on number of occasions the possibility of treatment with Remicade (infliximab), the drug mentioned in one of two the articles at the top of this thread - Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1, Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M, Int Anesth Res Soc. 2007;105(4):1148-1151 - I was put off at the time by the drug's possibly very serious side-effects, even though he was using it all the time on his rheumatology patients. And by the time the article came out five years later, I no longer had anything approaching an acute case of CRPS. So the issue was moot from my perspective.

I'm laying this out for you as best I can, so that no one is disappointed if told in Philadelphia that anti-TNF-[alpha] agents aren't yet ready for prime time in the treatment of CRPS. Still, you should by all means ask. The world has hopefully come a long way since 2006 when neuro-immunologists at both the Mayo Clinic and Johns Hopkins refused to see me as I was seen by other physicians at those institutions, because it was "well known that CRPS [was] not an autoimmune disorder." (Or so I would like to think.)

Good luck!

Mike
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Last edited by fmichael; 12-03-2012 at 12:30 PM. Reason: grammer
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Unread 12-03-2012, 03:25 PM   #10
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Thanks Mike for the read.

"Further complicating the issue is the role of for-profit insurance companies, who have become accustomed to very large, double-blind multi-center Phase III testing, before large pharmaceutical firms (Big Parma) finally gets FDA approval to market a drug that has cost $1B or more to bring to bring to market. And of that, according to a recent report of Forbes, over 90% of the total development cost can be in Phase III (final) testing alone! Enter the for-profit medical insurance companies, and suddenly it's very easy to deny coverage for a procedure that might require a week's hospitalization, sometimes utilizing an ICU. All it takes is to adopt the position that they will approve only those procedures supported by the "best medical evidence," which means the equivalence of Phase III resting, even if the drug at issue has long been approved by the FDA for other uses. And if the money isn't there to do the large scale testing these standards mandate, gosh, that's too bad. See, generally, Evidence-based medicine -Wikipedia article , at Section 6, Limitations and criticism."

My wife, who worked at Lockheed's corporate headquarters in "benefits", could not, did not receive proper care for her RSD for four years. Her coverage was Etna HMO then Cigna and then some other terrible outfit. She explained to me, representatives from each insurance company worked full time at Lockheed who pulled the strings and wrote the contracts that doctors sign off on. She told me she will not get the care she needed and that after 15 years of service she will be terminated in which she was. She needed her doctor (who offered very little care) to sign off on her 2 year long term disability.

The doctor she was seeing at the end of her short term disability was switched out at the last minute with the head of the pain center. He explained to the both of us that Suzy had RSD and what it was, in which we already knew, and then walked out of the office never to be seen again. He refused to sign the long term and never returned our calls. He told Lockheed Suzy was ok to return to work. She never did and was terminated, and that was in 2006. Ironically, Suzy's SS lawyer knew this doctor, and that he was quite up to date with RSD and in-fact helped her on several cases.

She lost her insurance in which I picked up my employers coverage. It was a Cadillac plan and very expensive. But what I will never forget is the immediate treatment she received from her new doctors. 4 years she struggled (she did not tell me her issue for 2 years), within 2 weeks of her termination doctors aggressively put forth an effort to control her RSD using the new insurance plan. Now she is on medicare receiving no care because only a very small handful of incompetent, pee testing, dirty waiting rooms, rude nurses--- doctors except her Medicare/Humana coverage. She rather suffer.

I just pray that perhaps one good thing that came out of these two wars the US has been engaged in is new successful medical treatments that may lead to pain relief for those long term RSD patients.
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