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#1 beedee

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Posted 17 November 2007 - 03:59 PM

Hello everyone!
I'd like to introduce myself and tell my story as I am new here. I am 19 years old and it has been quite the journey that had brought me to posting here.
This all started when I noticed that I had a faint bruise on my breast, I never thought anything of it, and it had probably been there for 3 or 4 months. I'm really not sure when I first noticed it. In April, I noticed that in addition to this faint bruise, there was a small lump on my chest above my breast. It was probably more of a raised bump than a lump. It was often hard to find and I really wasn't sure if it was supposed to be there or not. Concerned, I went to my family doctor, and he assured me that there was nothing to worry about, and sent me for an ultrasound. The ultrasound came back normal, and I somehow convinced myself that everything was okay. I worry about everything! By late May/early June, the bump above my chest had become the size of my palm. It was extremely hard and could be seen if I turned sideways (if you were looking for it). As well, I now had two bruised spots on my breast. I went to my family doctor several times, and he completely brushed it off, saying that it was nothing to worry about. I also seen a surgeon, who thought I should see a dermatologist. I was pushing for a biopsy to rn for me. I hope that this board will become a great source for support. Thanks evefind out exactly what was going on, but there was no way the surgeon would do it unless I saw a dermatologist. The wait for a dermatologist that is anywhere near me is 6 to 9 months, and as this thing was getting worse and bigger, I became more and more concerned. My biggest fear was breast cancer, no one could figure out what was going on, they would tell me not to worry about it, but no one ever knew exactly what was causing this. I became more and more convinced that I had breast cancer.
After months of disagreements with my family doctor, we heard that a new dermatologist was coming, and I got a referral to see him. I managed to get in to see him pretty quickly. By this time, I still had the bump above my breast, and most of the top of my breast, as well as the side, was covered with faint bruising, and thickness developed below these spots.
My visit to the dermatologist went well. We finally got some of the answers that we needed. He was pretty sure that I had morphea, he did two punch biopsies(one on the area where this started, and one where the bump is), to rule out cancer. He prescribed me tacrolimus ointment and scheduled a followup appointment for 6 weeks.
I saw him again a couple weeks ago, the biopsy results revealed that I do indeed have morphea. The tacrolimus ointment hasn't been working overly well, so he prescribed me amcinonide (steroid) ointment as well. So now I have to use both of the ointments. I use one in the morning and one in the night. The steroid has been making me break out. :mellow:
He said that if these ointments do not work, I am going to have to go twice a week for light therapy. Has anyone ever had this, and what is it like? What is the procedure?
I just noticed yesterday that a new spot is developing on my inner left forearm. It looks just like the early stages of what is on my chest. I have also noticed that my ring finger on my left had is swollen. The skin (or tissue below it), it thicker than on the other hand. I can't straighten it out completely, nor can I bend it as much as I can with my other hand. This scares me a lot as I don't know how far the morphea will spread. I'm not supposed to see my dermatologist until February 5th, but I plan on contacting his office to get an appt as soon as possible. I'm panicking a bit right now :( .
I look forward to learning more here and getting to know you all!
Danielle :)

#2 WestCoast1

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Posted 17 November 2007 - 05:32 PM

Hello Danielle,
I know that you will find lots of support here. Welcome to the Forums. The ISN is full of links and helpful information.

Feeling panick when things are uncertain is absolutely normal. But with a good team of doctors, and a support network, you will get through this. It seems as though it takes forever to see a doctor when all we want are answers. Before you know it, that day will be here. I would just jot down any questions that you have for the doctor and bring them along in case you are overwhelmed and forget.

There are many here with morphea who I am sure will share there stories. I think that you will be encouraged to find out that there are treatments for certain symptoms.

You may have many tests in the future, but they are all there to see where you are at in your illness. Everyone progresses differently...and many even come to find that their illness plateaus and becomes manegable.

I am so sorry to hear that you are so young and have to deal with morphea. We are here for you.
Take care and keep us informed.
*WestCoast*

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#3 epasen

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Posted 17 November 2007 - 11:30 PM

Hi Danielle,
I'm Emmi, 17 years old girl from Finland, and I've had linearic scleroderma for more than 11 years now. I'm sure that you'll find a lot of usefull and helping information from here, and the best part is, that these people can say that they truly understand what you're going trough.
Take care,
Emmi :)

#4 beedee

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Posted 18 November 2007 - 01:46 AM

Thanks Erin! :)
I am quite stressed about this right now, and I know stress is not good for this. We think that it is probably what caused it in the first place. A lot of my stress is caused by the fear of the unknown, not knowing how far this will spread, or if we'll get it under control is scary! My dermatologist has been awesome, hopefully I can get and appointment pretty quickly and he can rest my fears a bit.
It will be nice to see that there are others with morphea, I've told some people that I know about it and they've never heard it! Just nice to know you're not alone.

Danielle :)

#5 kselibrary

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Posted 18 November 2007 - 03:13 AM

I don't know if this helps at all, but I have been referred to an dermaimmunologist.

I didn't even know one existed! He only see's people with immune related skin disorders, and is a researcher. I'm hoping for good things from him.

I see him on the 28th.

Just wondering if you couldn't see if one is in your area as well.

Good luck.

#6 jefa

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Posted 18 November 2007 - 06:01 AM

Let me join the others in welcoming you to the forums, Danielle. I share your frustration with the doctors who brushed off the possible seriousness of the situation without offering an alternative possibility or at least continuing to search, especially when your fears were growing with the idea of a breast cancer diagnosis. I would have been scared, too. Erin gave you some excellent advice and the others. Let me also add the link to the Morphea page on out site which might help you find more information: Localized Scleroderma: Morphea


Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#7 Sweet

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Posted 18 November 2007 - 10:13 AM

Hi Danielle,

Welcome to the Sclero Forums. I'm so glad you've found us! I'm truly sorry of your diagnosis of Morphea. I see that Carrie has given you our link regarding this, and I hope you find beneficial information.

I look forward to knowing you better!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 Patty

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Posted 18 November 2007 - 04:38 PM

Hi ! Im Patty and I have limited sclero. I just wanted to say hello and welcome . sorry its about sclero but you are about to meet some of the most wonderful people one could ask you know. I guess what I am saying is welcome to the scleroderma family.
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#9 beedee

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Posted 19 November 2007 - 01:25 PM

Thanks for the warm welcome everyone! This will be a great source of support and information.
I called my dermatologist's office today and was talking to his nurse. She has been present during my appointments with the dermatologist and is familiar with my situation. I haven't been using the steroid ointment for long, so she told me to keep using it, and to use it on my new spot on my arm and on my finger as well. She said for my finger, where it would be hard to keep the ointment on it, to use a glove on it(like the ones they use for spas), to keep it on to let it soak in. She also said the the ointments would work better on moist skin. She said that its okay to wait til february because we need to give the steroid some time to work. She said that the next steps fromt he ointments are more extensive. It would be light treatment, and it would be twice a week. I guess they are trying the easiest methods first. She said I could call back if I had anymore concerns, but it will be okay until february. I will probably call back and insist on an appointment if I notice anymore new spots.
I feel okay with this for now, we just need to wait this out for a little while.
Hoping I don't find any more spots!
Thanks everyone!
Danielle

#10 janey

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Posted 19 November 2007 - 05:38 PM

Danielle
Welcome! I'm so glad you've joined us because it's a great place for support. Jefa has provided a link on morphea. Please be sure to check out the treatment section. It does talk about light therapies as well as others. It's good to know your options.

Just be sure to stay focused on life, not your disease. It's certainly natural to be stressed, so you need to do those things that make you happy. Spend time with friends and family and always make sure to laugh AT LEAST once a day. More is better. :lol:

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)

#11 beedee

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Posted 20 November 2007 - 02:48 AM

Thanks Janey,
I have been reading up on morphea, and was surprised to see how rare it actually is!
I am handling this decently well I think, and am focused on doing whatever I can do to get this improved. I have fear that it will spread more though. It's stressful sometimes, but I'm hangin' in!
Danielle