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Old 09-20-2007, 04:23 PM
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Vicc Vicc is offline
In Remembrance
 
Join Date: Nov 2006
Location: SE Kansas.
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15 yr Member
Vicc Vicc is offline
In Remembrance
Vicc's Avatar
 
Join Date: Nov 2006
Location: SE Kansas.
Posts: 374
15 yr Member
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Hello Flavio,

I have been pretty weak during the last few days and didn’t read your post until today. I want to reply to you as quickly as possible, as you asked to about information that you haven’t already heard, and what you’ve read here is pretty much what you read everywhere else: It certainly won't say what you will read here.

how early is early diagnosis? is 24 days early?24 days is extremely early, and I’m guessing it’s based almost entirely on the physician’s observation of a spreading area of warm red skin (inflammation). I am only aware of one mention in the literature in which someone was diagnosed with RSD in less that 24 days.

I have heard about stages, but could not find the rank. How many stages and what means each stage? In the past there was a lot of talk about 3 stages of RSD, but hardly anyone mentions that stuff anymore. I divided it into two stages: The warm, red skin of inflammation, followed by the cold, blue skin of cyanosis.

I’m assuming your wife’s dx is based on a widening area of inflammation, as that is the only sign I can think of that could be identified to soon.

What can we do to stop it to spread and evolve?Almost everything written about RSD during the 1st (inflammatory) stage comes out of the Netherlands (Holland), and is focused on treatment with antioxidants: Specifically the topical antioxidant DMSO. This method has been so successful that Dutch law now requires physicians to provide DMSO to their RSD patients.

The reason DMSO has been effective is that it neutralizes inflammatory molecules called oxygen free radicals (OFRs). They are responsible for the inflammation spreading. By reducing the number of OFRs, inflammation can’t spread as quickly.

But DMSO is a topical antioxidant, and inflammation is taking place throughout the limb in places DMSO can’t reach. In order to really suppress OFR spreading of the disease, you will need a systemic antioxidant.

There are several different types of systemic antioxidants, but I will only talk about grape seed extract (GSE). This is because I’m not familiar with the dosages of the others but I do about GSE. I know what I would do if my child was diagnosed with this disease in only 24 days: I would have her start taking 600mg of GSE daily, and apply a scent-free DMSO to the red skin 3 to 4 times a day.

600mg of GSE is 6X the recommended dosage.

I expect that before you would accept such radical advice from a stranger, you would want to know more about antioxidants and RSD, and you would want to know about any adverse events involving GSE and DMSO. You would carefully search the information on the Internet about these two products.

I can tell you what I learned in a search six years ago: There has never been a reported overdose of GSE, nor could I find anything about interactions between GSE and any food or medicine, nor about any side-effects from taking it. Apparently, the only thing GSE does is neutralize OFRs

Frequent application of DMSO does cause nausea and flu-like symptoms. When it was first introduced, it smelled bad and left a horrible garlic-like taste and breath. You can now buy cream-scented DMSO that leaves no taste or odor. I personally believe that if it offers any hope of stopping this disease during the inflammatory stage, I don’t mind feeling sick for a little while.

I doubt her doctors would agree with my suggestions, so the two of you may have to decide whether you go along or try these two products independently.

I don’t know about prices in Brazil, but here in the U.S., you can purchase both the GSE and the DMSO for under $50.00 total.

Time is of the essence. I don’t know whether my suggestions will help because there is no research into this at all, but I do know that there is a very small window of time. I just don’t know how small that window is

I am not saying you should try my suggestions rather than the doctor's: Try both (unless you feel antioxidants might adversely affect what the doctor's are doing). I would love to learn whether antioxidants alone can stop RSD in stage 1, but your goal is to help your wife win this fight, not conduct research...Vic

Here are a couple of abstracts about DMSO and RSD. I have others and will be glad to email them to you: Just click on the rsd_hbot link at the bottom of this page…Vic


Title Treatment of acute reflex sympathetic dystrophy with DMSO 50% in a fatty cream. Author Zuurmond WW ; Langendijk PN ; Bezemer PD ; Brink HE ; de Lange JJ ; van loenen ACAddress Department of Anaesthesiology, Free University Hospital, Amsterdam, The Netherlands. Source

Acta Anaesthesiol Scand, 40(3):364-7 1996 Mar Abstract Acute Reflex Sympathetic Dystrophy (acute RSD) was defined using a reproducible classification. Elevated temperature of the affected extremity ("calor"), measured by the dorsal side of the observer's hand and mentioned by the patient, pain ("dolor") measured by the Visual Analogue Scale (VAS), redness ("rubor"), edema ("tumor") and limited active range of motion ("functio laesa"), all contributed to the classification system. Patients scoring 4 to 5 positive symptoms were considered to have acute RSD. A prospective, randomized and double blind study was performed in 32 patients, all suffering from acute RSD. In all of these patients the primary injury was the result of a previous accident. One patient was taken out of the study because of his surgery. The study involved treatment with a fatty cream with 50% dimethyl sulfoxide (DMSO, group A), or without DMSO (placebo, group B), both for 2 months. All patients received physiotherapy applied within pain limits. Application of the creams resulted in both groups in an improvement of RSD-scores and VAS-scores after 2 months. However, the improvement of the RSD score in patients of group A (DMSO-group) was significantly (P < 0.01) better compared to group B. The results suggest a certain activity of DMSO 50% cream in patients suffering from RSD and is, therefore, recommendable. Language Eng Unique Identifier 96284595

* * * * * * * *



Cost effectiveness and cost utility of acetylcysteine versus dimethyl sulfoxide for reflex sympathetic dystrophy.

van Dieten HE, Perez RS, van Tulder MW, de Lange JJ, Zuurmond WW, Ader HJ, Vondeling H, Boers M.

Department of Clinical Epidemiology and Biostatistics, Vrije Universiteit, Amsterdam, Netherlands.

OBJECTIVE: To determine the cost effectiveness and cost utility of acetylcysteine versus dimethyl sulfoxide (DMSO) for patients with reflex sympathetic dystrophy (RSD), from a societal viewpoint. DESIGN: An economic evaluation was conducted alongside a double-dummy, double-blind, randomised, controlled trial. Patients were followed for 1 year. The primary outcome measure was the Impairment-level Sum Score (ISS). Utilities were determined by the EuroQOL instrument (EQ-5D). Both cost-effectiveness and cost-utility analyses were performed. Differences in mean direct, indirect and total costs were estimated. Corresponding 95% confidence intervals were calculated by bootstrapping techniques. RESULTS: Both groups (DMSO, n = 64; acetylcysteine, n = 67) showed relevant improvement; no differences in effects were found. Only the total direct costs were significantly lower in the DMSO group for the period of 0-52 weeks. The incremental cost-effectiveness ratios showed that, in general, DMSO generated fewer costs and more effects compared with acetylcysteine. Post-hoc subgroup analyses on cost effectiveness suggested that patients with warm RSD could be best treated with DMSO and patients with cold RSD with acetylcysteine. These results were based on small subsamples. CONCLUSION: In general, DMSO is the preferred treatment for patients with RSD.



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Last edited by Vicc; 09-20-2007 at 06:47 PM.
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