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En coup de sabre.


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#41 Shelley Ensz

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Posted 08 November 2012 - 10:10 PM

Hi Hello (or whatever...),

Welcome to Sclero Forums! I'm sorry you have concerns about Parry Rombergs.

I'm really stumped for how to respond though, as it is quite a jump to go from a very slight dent in forehead to Parry Rombergs, in a single leap. So part of sorting this out might be to ask yourself if you are prone to making a mountain out of a molehill, if you tend to obsess about your health for a hobby (since you referred to Internet paranoia, which some of us do suffer from more than others), or not? Well, don't accuse yourself of making it all up. Figure out the fact of the matter for yourself. Here's how:

One way to nail it down, would be to take excellent photos of it, today, and include a measuring stick next to the indentation in some photos. If it is a new and active lesion, it will very likely show some expansion in the near future. So also mark on the calendar to take photos of it again in 30 days and 60 days from today, including the measuring stick.

This will help you in every way. First, it allows you 30 days between time to forget about it, which is extremely nice when it comes to the Internet paranoia angle that concerns you. Second, it allows you to document it, both for yourself and, possibly, for your doctors.

Then if it does grow, you will know it for a fact and not waste valuable time accusing yourself of just imagining the growth. And you will have indisputable documentation for your medical team. And in that case, it would then be quite appropriate to find an expert in en coup de sabre or Parry Romberg's (some experts believe they are the same illness). The good news is that there are treatments available and unless it grows at warp speed (which you'll know about too, having documented it), several months is plenty of time to establish that you are on solid ground in trying to pursue a diagnosis.

Is it a deal, will you take photos of your forehead tonight, alongside a ruler, and will you check back to Sclero Forums at the 30 and 60 day mark, to let us know if the spot is worsening, or not?

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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#42 hellohello

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Posted 08 November 2012 - 10:49 PM

I suppose I could do that. (Though the pics will come tomorrow as its almost 1am here). But quick question- why do some doctors think coup de sabre and Parry Rombergs are the same? People with coup de sabre don't always report the unilateral facial deformity of Rombergs. Also, you mentioned treatments, could you please go into detail because I've read that it's pretty much hopeless. I'm just hoping that since I'm not necessarily in the core group that typically is effected by this sort of thing that its nothing serious.

Thanks again

#43 Joelf

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Posted 08 November 2012 - 11:54 PM

Hi Hellohello,

Welcome to these forums!

I'm sorry to hear that you're experiencing concerns about en coup de sabre and Parry Rombergs Syndrome. I'm afraid I can't really add anything to Shelley's reply but to help you with the queries in your last post I've included a link to our medical pages on Parry Rombergs Syndrome. This also includes a section on treatments which I hope you'll find helpful and informative.

As Shelley has suggested, please let us know how everything is progressing.

Kind regards,


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#44 hellohello

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Posted 09 November 2012 - 09:58 AM

Thanks to those who have responded but I have another question- is there anything else this could be? Because yes, I do seem to often make a mountain out of a molehill and am wondering what it could be since I'm not a female, I'm not between ages 5 and 15, and this thing affects what, 1 in almost a million people I heard? I'm just very paranoid

#45 Joelf

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Posted 09 November 2012 - 10:50 AM

Hi Hellohello,

I'm sorry that you're so worried; I'm afraid that I can't really advice you as to what you're actually suffering from, as although I enjoy telling my long suffering doctor how to do her job, I actually have no medical training apart from an out of date first aid certificate (handy should I need to splint a broken leg, but not much use otherwise!! ;) :lol: )

The only thing I can suggest is that you go back to your doctor and discuss your symptoms further with her. Perhaps if she's unable to help you she could refer you to someone who can?

Kind regards,

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#46 hellohello

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Posted 19 November 2012 - 11:07 AM

Hi everybody. Just went to the doctor today about the forehead indentation I was talking about before. Well, he told me that my indentation doesn't look like anything to be concerned with. He said he has "oh, absolutely" seen en coup de sabre and scleroderma before and that what I have does not look like any of that. He touched it, moved it around, and said the skin is completely normal and there aren't any lesions or hardening or anything. He said check back in a month just to be safe but other than that there's no reason to worry. Just thought I'd let you know.

#47 Shelley Ensz

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Posted 19 November 2012 - 11:26 AM

Dear "Hello",

It's good that your doctor has closely examined the area. Now if there are any changes, hopefully they will be able to recognize it. I still hope you've taken pictures, just in case you ever need to document any changes.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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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.

#48 Joelf

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Posted 19 November 2012 - 12:44 PM

Hi Hellohello,

I'm very glad to hear that for the most part your fears were unfounded. :emoticons-yes:

As Shelley suggested, it still might be worth taking photos of the indentation, if only for future reference.

Kind regards,

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#49 katchan

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Posted 21 January 2013 - 12:44 PM

Hi Everyone,

A lot has changed since the last time I posted. As you know my en coup de sabre came on very suddenly at the age of 33. I have been on mycophenolate for nearly a year now which my consultant wants me stop for a month in March to see if it has been working.

I have been suffering with severe headaches for a few months now with numbness in my face and arms and extreme fatigue. I have been referred to a neurologist who I see next week, not sure if this is all connected or not. I will be glad when I get some answers, if any one has had similar I would love to hear from you,

Best wishes.

#50 Joelf

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Posted 21 January 2013 - 02:56 PM

Hi Katchan,

Thanks for letting us have an update.

I'm afraid that I can't advise you about the numbness, headaches and fatigue you've been experiencing, but I hope that when you see the neurologist next week, he will be able to advise you and perhaps work with your consultant to offer you the best treatment.

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

Kind regards,

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#51 Amanda Thorpe

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Posted 21 January 2013 - 05:01 PM

Hello Katchan

I may be able to help with the headache, it may well be the mycophenolate. Look at the leaflet that comes with the tablets and it should be listed as a side effect, it was in fact the side effect that put an end to me taking it. I tried it on and off over a number of months and there's no doubt it caused me severe and frequent headaches. Also, Prof Denton (scleroderma expert) confirmed that mycophenolate can cause headaches, worth bearing in mind that this comes from a scleroderma expert should another consultant tell you the contrary. This happened to me and consequently I persevered with the drug and suffered crippling longer than I needed to.

Netdoctor states that mycophenolate can cause fatigue and headaches, and MedlinePlus also confirms it cause a lack of energy.

I don't understand how stopping in March will determine whether the drug is working for you or not and would have thought it would be an idea to use this stoppage time to see see whether your potential side effects abate. If your fatigue and headaches go then you'll know they are being caused by mycophenolate. By all means see the neurologist but I find it most odd your doctor hasn't considered that your headaches, at least, could be caused by mycophenolate.

You must bear in mind that I am a non-medical layperson speaking from my experience not any medical expertise and my experience says that the mycophenolate could be causing your fatigue and headaches, at least. I am assuming you have regular blood tests and that they have all been okay?

Take care.
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#52 katchan

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Posted 22 January 2013 - 10:49 AM

Thanks Amanda,

I have blood tests every 4 weeks and all have been fine, I have never considered that it could be my medication making me feel this way, I will mention this to my consultant next week. I have a scan booked soon and suppose I am a bit scared as two of my close family have brain tumours so am probably being a bit paranoid. Will keep you updated on what the consultant says, thank you for the advice.

Best wishes,

Kate

#53 judyt

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Posted 22 January 2013 - 03:22 PM

Hi Kate,

Headaches are just the pits!! wandering round all day with a thumping head is something I have done for far too much of in my life. In about 2004 or so my doctor and I finally got onto a combination which worked and the headaches were gone, poof just gone. That lasted 7 whole 'blissful' years until a change of medication came along.

It took months of pain to figure what was doing it, and for a while I was back to headachless bliss. Didn't last though, now, because I have PBC and my liver is developing cirrhosis I am back on another new med. which stirs up my head - you can't win it would seem.

However, don't despair, just remember that it can be the medication which is causing the grief and see what you can do to ease it. For me, in some cases just a change of manufacturer (and extra cost of course) can do the trick, at other times like now there is only one medication to help my liver and I don't think there is more than one manufacturer but I certainly plan to ask when I see my Liver Lady in a couple of weeks time.

Sending you good wishes that you will be able to solve your problem.

Judyt

#54 katchan

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Posted 30 January 2013 - 02:32 PM

Hi again,

Well went to see the neurologist, told me he thought En Coup was really boring and without even examining me told me I am suffering with severe migraines and gave me some antidepressants to control them. I feel really let down by the NHS, feels if they don't know much about something just chuck some pills at it and hope for the best. I'm seeing my dermatologist soon so maybe will talk through with him, fed up of feeling like a freak!!

Kate (katchan)

#55 Shelley Ensz

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Posted 30 January 2013 - 03:20 PM

Hi Kate,

You may now want to consult your scleroderma expert about the migraines. I quote from the main portion of our website:

"Overview of Localized Scleroderma Brain Involvement Localized scleroderma has also recently been associated with brain involvement, particularly with linear scleroderma and the type known as scleroderma en coup de sabre or Parry Romberg's syndrome. Findings include focal and progressive brain lesions, progressive brain atrophy, epilepsy, neurological symptoms, intracerebral inflammatory processes, migraine headaches, and trigeminal neuralgia. Therefore, neuroimaging studies should be considered in all patients with linear scleroderma, and certainly when neurological symptoms occur."

Now that you've had the migraines diagnosed, it would seem that the logical next step would be neuroimaging studies. At the very least it would provide a good baseline for you, should anything more develop in the future.

The good news in all this is that the antidepressants may help prevent migraines and reduce their frequency. As a migraine sufferer myself, I know that any sort of prevention or treatment for them is most welcome...especially if it works! So I'm hoping it proves useful for your migraines. But it would still seem to me, a casual observer with no medical training at all, that the next logical step for you is neuro-imaging.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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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.

#56 judyt

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Posted 30 January 2013 - 05:15 PM

Hi Kate,

Shelley has given you good advice, don't let anyone tell you En Coup is boring and not worth dealing with - that is dreadful. :emoticon-dont-know: I can't believe some practitioners can be so off-putting.

Anti depressants are not the only meds which will help control your headaches and I do understand how you feel so let down from being treated this way. Migraines were one of the first things that I started getting once the Scleroderma got going, although I didn't know it at the time. My first general practitioner sent me home with an antidepressant and told me I was overprotective of my children and anxious. Of course I was anxious, things were happening that were not normal.

My next general practitioner (I changed pretty quick) sent me to a Neurologist who did a proper investigation including brain scan and then decided that I had classic Migraine and I was treated for that. Much later in my life I finally got a diagnosis of Sclero and all of a sudden I was being treated more or less correctly and my headaches ended up being under control.

It is important to get to see somebody who knows what they are dealing with. There seem to be good centres in the UK so you should be able to get a referral to somebody somewhere who is going to look after you better than what you are getting now.

Best wishes
Judyt

#57 Shelley Ensz

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Posted 06 February 2013 - 06:21 PM

I'm still trying to figure out how en coup de sabre is boring!

Apparently you must have missed the poster that it is your job to entertain your physicians at all times? If a mere very rare disease is not enough to meet with their applaud, maybe next time you could try presenting your symptoms via a skit, poem or video?

Doctor, dear doctor,
So sorry, I'm sick
En coup de sabre
Has me feeling ick!

Doctor, dear doctor,
Oh what can you do?
My head is hurting
And I have en coup!

I do hope you've made a quality decision to never see that particular doctor again!

:emoticons-group-hug:
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.

#58 Brawnson

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Posted 11 March 2013 - 03:06 PM

Hello,

I am a 22 year old male and when I was about 11 or 12 my parents and I started noticing an indentation on the crown of my head. It was about this time that I also started having migraines. Thinking  of the dent as nothing  more than a soft spot, we went to our family doctor about the migraines.

 

The doctor prescribed some migraine meds (which did nothing) and referred us to a dermatologist for "the dent." One dermatologist sent us to another when I finally ended up at a dermatologists conference where I sat on a table while 15 doctors looked and felt my head.

 

They finally decided on a biopsy which confirmed scleroderma. I was then sent to a neurologist who walked in, felt my head for 2 minutes and said it's scleroderma and there's nothing to do about it and the migraines were not related. By this time I had developed another spot on the left side of my head above my ear.

 

So (at 17 after another visit to the neurologist), frustrated with no one having any clear answers I told my parents I was over it and could just live with it and wanted no more doctor visits. Well last summer I started noticing yet another spot on the right side of my skull. So I started doing research of my own and came across a study that linked sclero to migraines and other neuro problems. Being that I would like to have a family one day I've decided to check things out again with specialists. I have an appointment with the Mayo Clinic in April. Hopefully I'll get some info.

Just wanted to see if anyone else has had the same frustrating experiences and if anyone else has heard of spots around the crown of the skull.

Thanks,


Brawnson



#59 Shelley Ensz

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Posted 12 March 2013 - 11:15 AM

Hi Brawnson,

 

Welcome to Sclero Forums!  I'm sorry you have en coup de sabre, and send my best wishes to you. There are treatments available now, including UVA1 Phototherapy, that you might be interested in.

 

I know what it's like to become discouraged with doctoring; its especially frustrating and unfortunately it is also especially common when dealing with rare diseases, like scleroderma. As it happens, you must have been consulting a doctor who was not a scleroderma expert, nor had he bothered doing any research on it to find out the known complications or current treatment options.

 

As you've discovered, your migraines may be associated with en coup, please see our section on Localized Scleroderma Brain Involvement for more information.

 

I hope that you feel encouraged with more treatment options available and more information to help guide your care.  Please keep in touch and let us know how things are progressing.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
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Hotline and Donations: 1-800-564-7099

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

#60 Joelf

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Posted 12 March 2013 - 12:34 PM

Hi Brawnson,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with en coup de sabre and have had such a frustrating experience with your doctors. Sadly as Shelley has said it is quite common to hit a brick wall with some doctors who do not have the knowledge and expertise (but do have the ego!) to deal with such a diverse and complex disease as Scleroderma. I was incredibly fortunate with my medical team and received excellent treatment, but I know from some of our members' posts that not everyone has been so lucky.

 

Now that you've found our forums and joined our community, please do keep posting and let us know how you're progressing.

 

Kind regards,


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