Finding a specialist

[RumziGal]

How would you go about finding a specialist for a particular illness?

I'm trying to find out if Reflex Sympathetic Dystrophy (aka Complex Regional Pain Syndrome) is treated any more successfully in France than elsewhere.

What I've found so far suggests that it isn't, but I may have missed a vital website.  Many of the sites in French are translated from English anyway, usually based on American research.

In French, it's DSR or SDRC.   Are there any sufferers out there who have had successful treatment in France?

Merci,

SB

[Ergotherpeut1]

Hello Rumzigal. 

Not sure how relevant this is to you, may be a starting point?  I found it by doing a quick Google

1) B Cortet, RM Flipo, P Coquerelle, B Duquesnoy, B Delcambre. Treatment of severe, recalcitrant reflex sympathetic dystrophy: Assessment of efficacy and safety of the second generation bisphosphonate pamidronate. Clinical Rheumatology 16: 1 (JAN 1997):51-56. APD was administred intravenously (perfusion) to a dose of 1 mg/kg/day during 3, 2 or one day. Adverse events were noted in 14 patients: transient fever (n=6), venous inflammation (n=2), transient symptomless hypocalcaemia (n=3), nausea (n=1), lymphopenia (n=1), transient hypertension (n=1). Address B Cortet, Ctr Hosp Reg & Univ Lille, Dept Rheumatol, 2 Ave Oscar Lambret, F- 59037 Lille, France.

It gave a brief overview of the condition then went on to say Now we have a cure. A recent report from France shows that 86 percent of patients were cured by injecting a drug to strengthen bones, called pamidronate, into the veins. The pamidronate is injected one mg per Kg intravenously for two straight days or daily alindronate or calcitonin (3). A study from Italy shows that RSD can be cured with intravenous clodronate 300 mg daily for 10 consecutive days.

There are a number of studies cited within the same article, perhaps if you have a look at the page, http://www.drmirkin.com/morehealth/G160.htm  it will add to your armoury.  If you do not get anywhere with this, or other posting, I would be happy to look at some of the other published studies (had a quick look - mainly concerned with diagnosis criteria. etc).

Best wishes

[5-element]

I have pm'd you.

[5-element]

Still looking on your behalf, I found this link

http://www.rsdfoundation.org/fr/fr_cpg_pf.html

for Syndrome Douloureux Regional Complexe (DSR/SDRC) - it seems very comprehensive (Diagnosis, Treatment etc.) and is in French - which means that you could print it out and take it to a neurologue here in France, just in case this is a syndrome which is as yet unknown here.

I hope it might help.

[Winegum]

For various reasons we have needed two different specialists since we came to France. Both were obtained for us by our doctor here. Maybe you've already gone this route?

wg

[Quillan]

You have to go via your doctor else you will have to pay.

[CBC]

Your GP won't necessarily know of a relevant specialist - unfortunately I speak from experience:  "regardez dans les Pages Jaunes" ...................!  If you live in a large town, maybe, but a rural GP may not have come across the condition before and therefore not know who to refer you to.  As long as you have a letter from the GP you should be reimbursed.

Good luck.

[Dick Smith]

Wasn't the original question about whether the syndrome is treated more effectively in France?

[opas]

[quote user="Rp"]

Your GP won't necessarily know of a relevant specialist - unfortunately I speak from experience:  "regardez dans les Pages Jaunes" ...................!  If you live in a large town, maybe, but a rural GP may not have come across the condition before and therefore not know who to refer you to.  As long as you have a letter from the GP you should be reimbursed.

Good luck.

[/quote]

How right you are!

When our youngest was born she had some very unusual syptoms, after a misdiagnosis we asked our GP ( not my favorite one of the practice) to make some enquiries and find us a specialist, he was quite abrupt and asked where he should look? my other half replied that HE was the doctor not the HGV driver.......quite rude I know but desperation does strange things. Within weeks we had a consutation with a Specialist in Genetics in Leeds and a possitive diagnosis .

 

[Quillan]

[quote user="Dick Smith"]Wasn't the original question about whether the syndrome is treated more effectively in France?
[/quote]

Yes Dick you are quite right. I am only reminding the original poster that if they are registered in France and find the treatment is better then they should go through their doctor. Once they have found out if it's better and found specialist then just give the name to the doctor and he/she will give them a referal letter otherwise it could end up costing them a bomb.

[Ergotherpeut1]

I previously posted this information to RumziGal but thought it might be useful to other forum users. 

I recently came across an organisation called 'Maladies Rares Info Service' which, for the cost of a local call will give information on rare conditions.  It offers to put you in contact with the relevant associations or individuals/families touched by the same condition as well as find out the contact details of specialists within that domain.  Their telephone number is 0 810 63 19 20.  To access on the web, in various languages,  www.orpha.net

If people do use this service, I would appreciate it they would let me know how they got on with it.

Best wishes