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A Bit Upset About Diagnoses Of Morphea/systematic Scleroderma


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#1 Diana Miller

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Posted 11 May 2007 - 07:30 AM

I was diagnosed with a 'form' of scleroderma when I was 15 years old. I am now 27 years old with four children. The past two years have been extremely rough. I've had my gallbladder removed (1 large stone the size of a golf ball), I have bladder spasms, a lot of inflammation around my ovaries although not severe enough to have them removed. It controlled with medication.., I have had gastritis since I was 15. I also have heart palpitations which they blame on anxiety. Did I mention I had anxiety as well? ::sigh:: I have also started having a warm sensation in my toes on my right foot? No one knows what causes that. My joints are extremely uncomfortable now, and they pop constantly. Especially my knees.. my back has also started bothering me, and I have muscle spasms all over my body.. even in the most private places..

As I said I've had a lot of problems that I've always thought were caused by scleroderma. I did have a biopsy when I was 15 and all they came off with was 'a form of scleroderma'.

I went to the dermatologist last Friday. He set me up for blood work to test for 6 or 7 different antibodies. I am currently awaiting the results from the bloodwork to find out if I carry the antibody for systematic scleroderma. I have to say that I am extremely afraid.. I asociate everything that has gone wrong with me with Scleroderma. I really believe something is not right.

He did state that the markings on my back, sides, and stomach looked like Morphea. I just have a few questions so I am prepared for what ever happens this week.

If its Morphea will I die from this? I have 4 children ranging from 8 to 11 months. I'm completely terrified of this. (who's not?)

What is the average person like after they start having muscle spasms? Is this my muscles getting hard? Will I end up in a wheelchair?

I've never had symptoms from scleroderma up until 2 years ago.. its been downhill ever since. Any help would be soo appreciated. Thank you in advance. :huh:

#2 Sweet

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Posted 11 May 2007 - 08:00 AM

Hi Diana,

Welcome to the Sclero Forums! *hugs* I know how scary all of this can be and I'm really sorry you have morphea and are checking for other diagnosis. Here is a link for Morphea that may answer some of your questions.

Also, most people with Sclero live LONG LONG lives just like the average person, so please don't give yourself a death sentence. Here is a link that may help you with adjusting emotionally to all of this.

Take one day at a time, know we are here for you and will do anything we can to help.


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 janey

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Posted 11 May 2007 - 08:21 AM

Diana,
I'd like to join Sweet in welcoming you to the Sclero Forums. I'm glad that you found us and have joined. It sounds like you have had scleroderma for many years already and to have had four children during that time is very unique. Something that, in my mind, shows a positive outlook because you were physically able to do it.

I don't have morphea so I can't speak personally about it, but Sweet did provide a great link for you to review. Here's a couple of statements that I grabbed off that page and from the first link.
"Morphea typically has a benign, self-limited course. Survival rates for morphea patients are no different from those of the general population." eMedicine

"The most important thing to know about morphea is that it is very different from the systemic forms of scleroderma, and it is never fatal." ISN

I don't have muscle spasms but I do have severe muscle weakness due to an overlapping connective tissue disease. I refuse to let my muscles waste away, so I continue to exercise and do as many everyday activities as positive. It has helped tremendous and I'm sure that it will be many, many years in the future before I think about needing a cane or other walking assistance. I'm sure those 4 kids keep you busy, so you too, are extremely active which is so important. Keep moving even if it hurts!

Please let us know the results of your bloodtests. We'll be keeping our fingers crossed that the results are good.

Lots of big hugs,
Janey Willis
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#4 Diana Miller

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Posted 11 May 2007 - 09:57 AM

Thank you oh so much. I know the dermatologist is going to want me to see a rhumatologist? (sorry for spelling). I am hoping that the activities I was involved in as a younger child havent 'used up' or damaged the bones or muscles. I used to run cross country during high school, participated in cheerleading for a few years, was into softball. I love to run so not being able to run as much or for as long as I would like has really been difficult.


I had 5 miscarriages during the past 8 years. One included a molar pregnancy, and one was a tubal pregnancy. It was absolutely miserable being pregnant, but the end result was wonderful.

I am going to call Monday morning and hopefully the results are back in. He did give me a cream that he said would help in bleaching the skin so the spots werent so obvious.

My spots are like bruises, and oval shaped. They itch at times, but they dont hurt. :huh:

I forgot to mention that at age 14 I had 'bells palsy'. Its a disorder that temporarily paralyzes on side of the face. I do not know if this has anything to do with the morphea or not.

#5 Sweet

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Posted 11 May 2007 - 10:02 AM

My goodness girl you have been through the wringer! You need a break!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 Diana Miller

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Posted 11 May 2007 - 10:11 AM

i know tell me about it!! You should have seen me at 15 swallowing dye so they could view my intestinal tract. ::sigh:: All of these things can't possibly be morphea.. but I'd be heart broken if it were systemic. I hate waiting this out.. its been long enough ya know.

#7 WestCoast1

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Posted 11 May 2007 - 12:47 PM

Welcome Diana,
I am so sorry to hear about all of the health issues you are going through. It sounds like you are on the right track and visiting the appropriate doctor's to help you out. The antibodies test is the first step. There are some people here with Systemic Scleroderma, so please try not to panic and think the worst. There are things that Doctors can do to help with each symptom as it arises.

I do sympothize with you. I have been there once. There is that initial panic, and the thought of your children. For me this was several years ago when I just "knew" something wasn't right. I am still here, I appreciate every day and moment with family and friends. I have also learned that this IS something that I can get through. I won't think of tomorrow, just enjoy today.

It looks like Sweet has provided for you some good links. Please keep us informed of your progress. We are here for you!
*WestCoast*

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#8 jefa

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Posted 11 May 2007 - 07:52 PM

Welcome to the Forums, Diana. I am glad you found us and know you will be able to get a lot of answers and support as you already have from Sweet, Janey and Erin. I am sure you will find some relief in Janey's reassurances about your morphea. I don't have morphea, but I have been experiencing the warmth and pain in my little toes. Do let us know what you learn from your tests.
Warm wishes,
Jefa

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#9 LisaBulman

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Posted 12 May 2007 - 01:13 AM

HI DIana,

Welcome to the forums! As you can see we are all very friendly, warm and supportive here! I see you have already been provided with links and information about morphea. Try not to stress about things that you can not control. I know it is easier said than done.

Please let us know when you hear from the doctor.


Lisa Bulman
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