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SCARED, Thought my Disease was only Cosmetic, found Inflammation behind eye! Linked with Sclerderma

morphea linear scleroderma scleroderma

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#1 hayleylouiselewis

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Posted 14 July 2012 - 05:00 AM

First of all sorry if this all makes no sense, I am not good with wording haha

My name is Hayley I am aged 23 and live in Bristol, UK. I have had Morphea since I was 7 years old. My mum discovered it and we started going to the hospital on a regular basis.

So I have a very deep indentation on the right side of my head it is about inches (hair does cover it but have to wear hair certain way to hide the dip) I have no fat tissue or muscle in my right temple so it dips in (also have to have a heavy fringe to cover) Large area of back and collar area is also discoloured and loss of muscle and fat tissue. As you can see most of my condition is cosmetic and I have had many things done to even out the right side of my body to the left like fat collagen injections, face lift on right side, fat tissue from my legs and abdomen put into pack and front area.

My condition also means that I have lost a lot of nerves in the right side of my face. My right eyebrow, nostril and part of lip is paralyzed. I have seen many doctors about this and there is not much that can be done :(


I was bullied in little school and big school, moved schools 3 times. People used to call me dent head or jackal and Hyde because of the difference right and left side of my face. I have accepted that I look different and I try to hide it the best I can with my hair but it does affect me. A lot of people say they don't see it unless I point it out. Now I have had all my surgery I think I look pretty normal :D

About 2 years ago I started to get blurry and double vision in my right eye. I did not think it had anything to do with the condition. Yesterday 13.07.12 I had an appointment to see what can be done about my eye...My Doctor sat me down and told me that they have found inflammation, fluid and white cells behind the effected eye :( This is very upsetting for me as I never thought it would become more serious and dangerous. He has booked me in for a emergency 3 day treatment undergoing 4 steroid injections to try and get rid of the inflammation. He has scared me of many things that could go wrong and things that may happen if the steroids do not repair the eye.

Having this double vision which is getting worse every day is very upsetting.

I am faced with....

Not being able to work

Vision is not good

Not being able to drive

Right eye is turning in and very visible

Undergoing a lot of ongoing surgery and steroids.

I am scared and worried what the future may hold. Has any one ever been through a similar situation or is going through the same thing. I have been told by my doctor that I have a very RARE case of Scleroderma as it effects my nerve system.

Thanks for reading. H x



#2 judyt

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Posted 14 July 2012 - 11:32 PM

Hello Hayley,

Sorry to read that you have Scleroderma and have been putting up with it for so long. It is a shame when other children are cruel, and I feel really sorry to hear your story.
However, what you are concerned about is what is happening now, and I am afraid I know nothing about the things you are facing but I do know that when we are in hospital and facing surgeries and other serious treatments the doctors are obliged to point out all the things that could go wrong.

Most of the time nothing untoward happens and all that emotional terror turns out to be a waste of time and energy, so I would think that the best thing you can do to help at the moment is to try to stay calm and think of happier things. Be thankful that there is treatment available and we all hope that in the end you will have some relief.

Warm hugs, and best wishes
JudyT

#3 Joelf

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Posted 15 July 2012 - 12:21 AM

Hi Hayley,

Welcome to these forums!

I'm sorry to hear that you've been suffering from the affects of having Morphea for such a long time and now have this further complication with your eye to contend with. Thankfully, I've not experienced the problem you describe, but I've included a link to our medical page on Eye Involvement and also another thread on Eye Problems which I hope you'll find helpful and informative. We may also have other members who might be able to offer you some first hand advice.

I can understand how worried and scared you must be feeling and would suggest that you don't scour the internet for dubious information, as that can make you feel all the more anxious (don't I know it! ;)) Easy to say, I know, but perhaps it would be better to wait until you've had the steroid treatment and everything has settled down and then go back to your doctor who may then be able to give you a more positive prognosis.

Now that you've found our forums and joined our community please do keep posting and let us know how your treatment progresses.

Kind regards,

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#4 Amanda Thorpe

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Posted 16 July 2012 - 01:11 PM

Hello Hayley

Welcome to the forums. You are clearly a very brave and determined person to not just survive what has happened to you but to thrive as a result. I am so sorry people made fun of you when you were younger, that was cruel and pointless.

I know nothing about the eye involvement so can't help there but I would be afraid as well in the face of the unknown, at least your doctor is on the ball and you have treatment available to you.

Please keep us informed as to how things go and I hope the treatment is successful.

Take care.
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#5 hayleylouiselewis

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Posted 16 July 2012 - 02:20 PM

Hello again. Thanks for replying....really nice to get support through this site and support others. I knew that no one would be able to relate to my problem as it is really rare but it is caused by the scleroderma so I will keep posting.

I have tried to upload some pics of before and after my surgery but will have to wait till I go onto my PC.

Would really like to find someone who has experienced anything similar in anyway....as little anxious about the steroids and side effects.

I will try not to scare myself just hope all steroids fix my eye then I can continue my surgery on the cosmetic side of things :)

#6 Joelf

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Posted 16 July 2012 - 02:45 PM

Hi Hayley,

Well, I've had steroid injections (although thankfully not in my eyes). I had them injected into my hands to help with the bi-lateral carpal tunnel syndrome I was experiencing and although they temporarily helped with the numbness and stinging I experienced, ultimately I required the decompression operation to alleviate the problem (my wrists are still quite painful even so). I take 10mgs of prednisolone (steroids) at present and have taken them for the past three years. I wish I could tell you that they don't have side effects, the most noticable is weight gain; however, for me the advantages of them far outweigh the disadvantages. Not only did I feel 100% better once I started taking them but in February my consultant suggested I reduce the amount from 7.5mgs to 5mgs and within 4-5 weeks I had a flareup in my lungs, so I'm back on 10mgs again. C'est le vie!!

I've given you the link to our warning about steroids and Scleroderma patients as in some circumstances they can precipitate a renal crisis. They can cause mood swings, although in my case they had me bouncing off the walls (I don't do moody!;)) but I had no side effects from the injections I received and only really noticed anything after I'd been on them for while.

Kind regards,

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#7 hayleylouiselewis

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Posted 16 July 2012 - 02:52 PM

Thanks Jo

Really helps a lot, sorry that you are still ongoing steroids treatment but you said you feel better for it...so that is good :) . I am having the injections in my arms...over 4 days... It's not to atop pain for me though it is to try and clear the white cells and inflammation.

I do not want to come across vain in anyway but I am worried about weight gain....I go to the gym 4 times a week. I wonder if there is anything to stop the steroids from making me big....hahaha

I might only need them once. Let's hope so ay :)

#8 Joelf

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Posted 16 July 2012 - 03:04 PM

Hi Hayley,

Aha, a girl after my own heart........I also spend most of my life at the gym (when I'm not posting on here!! ;) :lol:) I fully understand your worry about gaining weight; hopefully if you're only having the injections once it shouldn't affect your weight (I'm not a doctor, though, so can only advise through my own experience.)

I try to be very careful with my diet (steroids can increase your appetite so that's one thing to aware of) but I comfort myself with the thought that if I didn't take the steroids I would be 1) very ill and 2) wouldn't be able to work out at the gym at all, so it's really the lesser of two evils.

Hopefully you will only need the one course of injections; I do hope so.

Kind regards,

Jo Frowde
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#9 Amanda Thorpe

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Posted 18 July 2012 - 05:37 AM

Hello Hayley

Trust me there are worse things than weight gain. Scleroderma has taken me through just about every size range from an 8 to nearly a 16 more than once because of gastro issues, heart failure and side effects.

I prefer being a 14 to any other size, lingerie shopping becomes quite delightful, for example. If you do gain weight look for positive aspects because you won't really have much choice so you might as well make the most of it.

Prior to scleroderma I was also a gym fanatic, I even kept working out at home once the scleroderma started (didn't know it had started of course), climbing onto my cross trainer even though I had lost mobility in my ankles. What a total idiot, all I did was give myself fasciitis.

Try and take it easy on yourself, do whatever you have to in order to get better and I hope that's exactly what happens for you.

Take care and keep posting.
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