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Hi Everyone,

 

Gareth was in to see his rheumatologist this morning and she was examining his hands and commented that he is showing signs of Raynaud's now and to watch for ulcers. Dummy me......I have noticed that they are cold & white colored a lot of times but assumed that you needed all 3 colors....red, white, and blue for the diagnosis of Raynaud's. Anyways, does that mean the Plaquenil isn't working as well? I never thought to ask her that. He also told her that his bagel got 'stuck' on Sat.....something I didn't know anything about. Now we have to watch for the esophageal dismotility again. She said his eyes and skin are dry.....get him some OTC eye drops. Is that sclero related or do we add Sjorgen's to his diagnosis?

 

Also....is it pronounced 'Raynard' or 'Raynod' ?

 

Take care, Everyone.

Margaret

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It is pronounced Raynoze. The Plaquenil shouldn't really have anything to do with Raynaud's, Margaret. It will need to be treated separately.

 

Here is a link to our Raynaud's Page for your information.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Has your rheumatologist run a test for auto-antibodies? This test can indicate if he has the Sjogren's auto-antibodies, as well as tell about other autoimmune conditions. The lab order from my rheumatologist says "Lupus analyzer panel", but refers to much more than lupus.

 

There is also a test of tears in the eyes (Shimmer Test, or something like that). Little strips of paper are placed just under the lower eyelids. The ability of the eyes to make tears is guaged by the amount absorbed by the paper, and helps with the diagnosis.

 

Craig

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Margaret,

It's funny that you ask about the pronunciation of Raynaud's. Just yesterday, this young cardiac rehab tech pronounced it RAY-nadds. Caused a little giggle under my breath. :lol: As Jefa mentioned it's RAY-noz with the emphasis on the first syllable. I always have a hard time pronouncing it for some reason. I always want to add that "d" in there. Just doesn't seem natural to keep it silent.

 

Several people with scleroderma do develop sjogren's syndrome. I don't have sjogren's but I do have drier eyes that I use to. Definitely something to look out for. The OTC eye drops do work for me. I've been able to start wearing my contacts again.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Yes, I have had so many doctors repeat it when I say Raynose, they say Raynadds and I want to say ,"That't not correct!"

Nan

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Hi Everyone,

 

OK....Jefa says 'RAYnoze'...long O.

Janey says 'RAYnoz'.......short O. Which one?

 

<<Has your rheumatologist run a test for auto-antibodies?>>

 

Craig......he was tested when first diagnosed....18 months ago. Positive ANA, speckled pattern, diffuse cytoplasm, along with a positive Anti-RNA Polymerase 1/111. She didn't say anything about more testing this time. Guess I could always ask her about it. She does want a Pul Function test done.

 

Take care, Everyone.

Margaret

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Margaret,

You've opened up that can of worms I've wanted to deal with personally for a long time - HOW DO you pronounce Raynaud's? Well, here's what I've found - it is a French word, therefore, the "d" is silent. It seems to be the consensus that the pronunciation is Ray-noz (long o) or Ray-nose. Here is lies the difference - Some sites accent the first syllable and some the second syllable. UGH! :(

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Maurice Raynaud was the guy who gave name to the condition. We have to remember that he was French. My doctor and other rhuematlogists pronounce it Ray-nodes, rather french like!

 

I've had tests for sjogrens, pronounced Show grens! and although my eyes can get quite dry, I haven't been diagnosed with the condition!

 

My dad says Rayners, my friend Raywotsit. I just know that it's a nuisance however you say it!

 

Best wishes

Barbara xxx

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:lol: All very funny. Yes, Mr. Raynaud was French, so his name would be pronounced Ray-Know. Because it was his disease, it is Ray-Know's disease. We are anglicising the word by using it as an adjective. The Eiffel Tower is a similar situation. Eiffel is a name and in French they say, Tour Eif-FEL with the emphasis on the second syllable. But we who refer to it in English, don't call it the Eif-FEL tower, but the EYE-ful tower.

 

I haven't heard anyone pronounce the second syllable, but I have heard at least one doctor pronounce it Ray-nods. At the beginning, I wanted to spell it with an 'e' instead of an 'a' like the fox.

 

To add to the confusion, there is another syndrome entirely called Reynolds syndrome in which patients have progressive systemic sclerosis and the autoimmune liver disease primary biliary cirrhosis.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I was told to spell it: Raynaud's. With the letter l in it. I notice hardly anyone spells it using the l. I then was told it was also pronounced without the d. I was taught to say Ray-Naws. Funny how different areas in the country pronounce it differently.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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<<my friend Raywotsit >>

 

Ray what's it........Sounds the best!!! I didn't realize I was the only one with a problem saying it!!!

 

Take care, Everyone.

Margaret

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[email protected] Margaret! :P That one sounds the best yet.

Well from reading this thread I've been guilty of mis pronouncing it as well. I've always pronounced it literally as it's spelled with the d.

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Boy, can I ever related to this discussion. I can't even pronounce Raynaud's correctly! I mean, really, if anyone should be able to pronounce it confidently, you'd think I could, wouldn't you?

 

No matter how I say it, it sounds wrong, and many times when I am forced to refer to it in conversation, I'm asked, What did you say?! To make it worse, no matter how anyone else pronounces it, it still sounds wrong to me. Or if they say it beautifully, I can't remember how they did it well enough to duplicate it on demand.

 

I have a horrible time with pronouncing most medical words, or any word I haven't heard repeated dozens and dozens of times; my verbal recall for pronunciations seems to be on the low side.

 

Then consider, when I do hear people pronouncing medical words, they are usually from another part of the country and often even another part of the world. Meanwhile, I'm stranded here in Minnesota (pronounced Minee-SO-dah) and I'm frequently and probably rightfully accused of having an accent from the movie "Fargo".


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Well heres another version to add to the confusion. I always thought it was pronounced ' Ray-Nowds' and everyone I know here in NZ sounds it the same. Boy, we really need to be re-educated :lol::lol::lol:

Susannah x

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