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Chris1

En coup de sabre? (ECDS)

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Hi, thanks for taking the time to read.

 

I have developed a vertical indent on my forehead that I first noticed about a month ago. It has quickly become more prominent and I'm not really sure what to make of it. It stretches from the center of my forehead at my hairline to the corner of my right eyebrow. If I run my finger over any part of the line I can feel what seems to be an indentation in the bone.

 

Does anyone know if this is congruent with initial stages of ECDS, or if not, what else it may be?

 

Here is a picture:

https://www.sclero.org/forums/gallery/image/1172-20181217_194838jpg/

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Hi Chris,

 

Welcome to these forums!

 

I'm sorry to hear that you've had a worrying symptom, which is concerning you. It's possible that it could be the beginnings of en coupe de sabre; however, as I have no medical training, I'm not able to verify whether this is indeed the case, or not. It could also relate to any number of health conditions and so I would therefore suggest that you should make an appointment with your doctor to ask his advice about it and take things from there. He would be the best person to decide if it warrants further investigation from a specialist and should it subsequently turn out to be ECDS, then you may need a referral to a listed scleroderma expert.

 

I've found another thread En Coupe De Sabre, which may be of interest to you.

 

Kind regards,


Jo Frowde

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Thanks for the response. Yesterday I did actually book an appointment with one of the specialists listed on your link, so am very happy to have found that info here. Unfortunately his first available appointment isn't until March, so that wait will be unbearable. 

 

It's so difficult to find information on this specific form of the disease, so I've been hoping to find a way to connect with people that have it to know what their initial signs and symptoms were, since pictures I've seen online typically are late stage.

 

Also I've been hard pressed to find anything else it might be. 

 

Additionally, I've had a positive ANA on past blood tests and have horrible chronic GERD, which has gotten so bad that I've been diagnosed with Barrett's Esophagus. I've also long had Raynaud's. Not sure if there's a potential link between them all or not. 

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Hi Chris,

 

I'm very pleased to hear that you've managed to arrange an appointment with a specialist and hopefully he'll be able to advise you about any treatments and also about any possible link between your other symptoms and the ECDS.

 

Please do let us know about how you get on with your appointment.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Just following up to say that I have indeed been diagnosed with ECDS. Starting on 10mg weekly injection dosage of methotrexate and hoping for the best.

 

I will keep this community posted on the progress in case anyone else ever comes across this post desperate for info like I was, so they have a bit more to hopefully go from.

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Hi Chris,

 

Thanks very much for letting us know the outcome of your appointment and I do hope that the treatment you're receiving will be successful.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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On 12/18/2018 at 7:11 PM, Chris1 said:

Thanks for the response. Yesterday I did actually book an appointment with one of the specialists listed on your link, so am very happy to have found that info here. Unfortunately his first available appointment isn't until March, so that wait will be unbearable. 

 

It's so difficult to find information on this specific form of the disease, so I've been hoping to find a way to connect with people that have it to know what their initial signs and symptoms were, since pictures I've seen online typically are late stage.

 

Also I've been hard pressed to find anything else it might be. 

 

Additionally, I've had a positive ANA on past blood tests and have horrible chronic GERD, which has gotten so bad that I've been diagnosed with Barrett's Esophagus. I've also long had Raynaud's. Not sure if there's a potential link between them all or not. 

Hi Chris, From my knowledge and experience, I would indeed think that these issues are linked.  

I am however pleased that you have had a formal diagnosis and appropriate treatment.  Many of us have waited a long time for that.

I hope that you are receiving an appropriate treatment for Barrett's Oesophagus, e.g. a Proton Pump Inhibitor.  That does need to be kept under strict control.

I wish you all the best and hope that the Methotrexate helps. Please do keep in touch to let us know how things progress (or hopefully symptoms don't progress).

 

Dimarzio

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