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#1 a_sharpe1

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Posted 07 April 2008 - 08:49 AM

Hi. My name is Angie. I live in Tennessee and have recently been diagnosed with Morphea by a Dermatologist. It was diagnosed by way of punch biopsy. Since the diagnosis I have had NUMEROUS new patches appear including several in my lower spline area. I'm also having a LOT of arthritic pain, as well as stabbing, shooting pains in the areas of new patches. Does anyone else have these type symptoms? Any ideas on treatment that might bring the symptoms under control? Also, I know I need to get in to a doctor, but am unsure whether I need a Rheumatologist or Dermatologist. The Dermatologist I saw told me, in a nut shell, there's not much that can be done aside from high dose steroid creams which can be used for a month at a time only. No bloodwork has been run, but the Dermatologist did say my biopsy did not indicate "autoimmune". Has anyone heard of this? Everything I've read has been indicative of autoimmunity. I also have many symptoms of systemic involvement. Can a biopsy conclude whether it is localized or systemic? Any help you can offer is greatly appreciated. I'm sorry for such a long post. It's easy to let your mind get the best of you and with such little information out there, it makes it hard to know what's really going on. Thank you again. Talk to you soon.

Angie
Love for All ~

Angie

#2 truman

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Posted 07 April 2008 - 09:10 AM

Angie:

How can the dermatologist determine it's not an autoimmune disease without blood tests?

First step is to the Rheumatologist! They do extensive blood work, that is not usually performed by a general practitioner. They'll determine your ANA numbers and whether or not you have an autoimmune disease.

It was the Rheumatologist who diagnosed me, my friend with RA and my other friend with Polymyositis.

I could be wrong, but our friends here will share their opinion as well.

Hope all goes well and keep us updated.

Linda
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It is what it is...........

#3 janey

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Posted 07 April 2008 - 09:11 AM

Angie,
I'm sorry to read about your diagnosis and all of the problems you are dealing with. Based on the comment from your current dermatologist that "there is not much that can be done...", I think you need to see another doctor. With morphea you can go to either another dermatologist or rheumatologist. I didn't find a scleroderma specialist in Tennessee, but here is a link to rheumatologist in Tenn.

We also have quit a bit of information on morphea and morphea treatments. I'm hope you can find something useful on these pages.

I hope you find a good doctor. Please let us know and keep us informed on how you are doing. You've found a great group of supportive and information people.

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)

#4 Sheryl

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Posted 07 April 2008 - 09:54 AM

1_sharpe 1, Welcome to our forums.
I am glad you are jumping right in and asking questions. Most of us go to Rheumatologists. They control most of our blood work, tests to be done and what medications we should be taking. They in turn order these tests and decide if we need to see other doctors for what is going on inside or outside our bodies. We have several in our group with Morphea they may jump in later, and help you in determining what you want to ask your specialists. You should learn so much here and make friends fast.
Strength and Warmth,
Sheryl

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#5 Shelley Ensz

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Posted 07 April 2008 - 09:58 AM

Hi Angie,

These are good questions; thank you for raising them!

As it happens, morphea occurs in patches, like you describe, and has a color change to the skin, as well. Systemic scleroderma does not have a color change to it, and the hardening typically begins in the fingertips and moves upward. So, they are very different; different enough that it could be determined just by looking at it, by a knowledgeable person.

Thus, you could probably be pretty certain about it being morphea rather than systemic. But, there are some treatments available for morphea, depending on what stage it is in. And about 25% of morphea patients experience one or two symptoms outside of "just" the skin patches. The additional symptoms don't mean a person is developing systemic; the best estimates on morphea "advancing" from just skin involvement to systemic scleroderma put the occurrence at zero (meaning some centers find that it NEVER happens) up to 4%, at worst. Many doctors consider that the 4% are really cases of systemic that was just misdiagnosed in the first place (probably from a doctor not understanding the difference in types of scleroderma); in a few instances they'll admit that an overlap occurred; but often, because it is so extremely rare, they will deny it could ever even happen for morphea to turn into systemic.

It's "normal" to have pain where the lesions are occurring, especially if the lesions are deep and affecting underlying muscles or bones. Please see a scleroderma expert, just be sure to say you have "Morphea" when booking the appointment so you get the (most probably ) right expert in that center. And again, here is our Morphea link for more information:
 


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.

#6 Snowbird

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Posted 07 April 2008 - 10:31 AM

Hi a sharp1

Sorry to hear you're having a bad time with this....I'm with the others, you'll want to see a good Rheumatologist knowledgeable in Scleroderma.
Sending good wishes your way!

#7 Bunky

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Posted 07 April 2008 - 12:29 PM

Hello a sharpe1,

I'm so sorry to hear of your morphea diagnosis. I have morphea, too, although not a "classic case" as my doctor calls it. It's not deep or painful.
There are other treatments available besides steroid creams. I definitely recommend a rheumatologist, but only one experienced with morphea and scleroderma. Hopefully you can find one in your area.

Good luck to you, and take care,
Bunky

#8 smac0719

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Posted 07 April 2008 - 02:19 PM

I too have what my Dermatologist described as morphea plaques, but the rheumatologist later described it as keloid scleroderma. I have raised, darkened skin patches all over my upper torso, upper arms and a few on my upper legs. My sclero was diagnosed with a skin biopsy (the 3rd one). They don't bother me too much, but the larger ones itch sometimes.
I may have Scleroderma, but Scleroderma doesn't have me!

#9 Karenlee

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Posted 08 April 2008 - 02:30 AM

Hi a sharpe 1 and welcome to the forums.
We all know the feeling of being frightened and not knowing where to turn so you have come to the right place to find answers and comfort from a wonderful bunch of people. I am fairly new, so I may not be able to answer all your questions, but I am here to listen and give you what information I do have.

#10 smac0719

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Posted 08 April 2008 - 12:46 PM

DON'T GIVE UP. It took over 2 years, 2 dermatologists, 3 primary physicians and 4 Rheumatologists for me to get a diagnosis. The 3rd Rheumatologist at Shand's Medical Center here in Florida told me I did not have an autoimmune disorder and not to come back to see him (but he told me I had auto immune thyroid disease - go figure!!!). My syptoms for a long time were just an extremely high ANA, tightness and extreme pain (to the touch) in my arms and feet (not hands or fingers), achy hands and feet, discoloration of my skin in certain areas and chronic fatigue. All of the auto immune labs came back normal. But, I knew my body and knew something was wrong so I continued seeking physicians who were willing to help me find out. I now have a team of doctors who support me and take my health seriously. It can get frustrating and overwhelming, but stay strong!
I may have Scleroderma, but Scleroderma doesn't have me!

#11 a_sharpe1

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Posted 08 April 2008 - 07:44 PM

Smac, how did you keep your patience and sanity through those two years? Better yet, how did you keep from telling that doctor just exactly what you must have thought of him:angry:? How in the world can you have auto immune thyroid disease but no auto immune disorder:wacko:? Duh, I'm far from a doctor but can put two and two together. Hey, on a good day, I can even give you the correct answer of two and two. :lol: LOL... Wow, that had to be a very trying time for you. I'm sorry you had to go through so much to get a diagnosis. Thank goodness you've finally got the doctors you deserved to have all along ;) . Did it take two years for your labs to finally turn up positive for autoimmune? I think doctors rely too much on the lab work sometimes. After all, if it walks like a duck and quacks like a duck, why treat it like a dog? In my opinion the most frustrating aspect of beeing seen by doctors such as the rheumatologist you saw is that without his patients, how woulld they pay their bills? Yet so many of them have the audacity to treat a portion of their patients as if they have no idea what's going on. Please don't get me wrong ~ I'm sure there are by far many more 'good doctors' out there. Sometimes though, the hardest part is finding them :lol: . I'm with you when you say that you know your body and you know when something isn't right. I'm 33 and for the past 5+ years, I have dealt with arthritis that progresses a little bit more each year. Until these lesions began appearing, I had been diagnosed with several vague conditions and to be brutally honest, I have felt that more than one of my doctors has looked at me as if I was a complete hypochondriac. I knew all along that something was going on and that it was just a matter of time. You said before that your diagnosis is keloid scleroderma but that you have morphea plaques. I haven't read much on keloid scleroderma - is it classified as localized scleroderma like morphea is, or does it fall under systemic involvement?
Love for All ~

Angie

#12 smac0719

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Posted 09 April 2008 - 03:25 AM

LOL!!! Sharpe, I needed a few of those laguhs this morning. I just got a call from a hospital telling me I have a colonscopy scheduled for tomorrow morning, but my Gastro didn't bother to tell me first. :o I won't fuss at him until after the procedure is done :lol:

I tell you, my family, unknown inner strength and faith kept (and keeps) me perservering. There were many days that I just cried because I was in pain, my quality of life had changed and I didn't know why. I also felt I wasn't getting anywhere medically. The doctors wouldn't prescribe anything for pain because they didn't know what they were treating. One of my primaries (oh how I wish she were back in private practice) did prescribe prednisone early on just to give me some relief. It did work, but only at the higher dose and I couldn't stay on it due to that.

My symptoms were slow moving: chronic fatigue and arthritis of the hands and feet - fall 04; skin discoloration and darkened pigmentation (hands, arms, thighs, part of my lower legs and half of my feet); tightening skin spring 05; skin pain summer 05 which continued until spring 07; morphea began in 05. That's all I had along with a high ANA (640 and speckled). Winter 06 is when I started seeing the keloid plaques appear (although I have probably doubled the number I have within the last 6 months) and it was 12/06 when I had my 3rd skin punch biopsy that the Derma was certain that it was scleroderma. It was their thought that mine was systemic. They knew someone who knew Dr. Silver at MUSC and worked diligently to get me set up with an appt with him. I went 1/07 and have been seeing him 2-3 times a year ever since.

Last time they checked my labwork for auto immune diseases it still didn't reflect positive which is the craziest thing, but I exhibit many of the symptoms. I have frequent numbing of my fingers and toes (where it feels like they're going asleep, but no color changes though); I am very sensitive to cold; the skin on my arms from the wrists to elbow are extremely tight, but not on my fingers and hands (although a butterfly needle to the top of my hand is an absolute torturous experience painwise so the tightening must be under the skin). Fibromyalgia has been the most recent addition to the list. I've had GERD for a while so I don't know if it was a condition of the sclero or something I just had already.

So, with all that being said, I know I don't have an extreme case of sclero, but it is a challenging disease nonetheless. I never thought I would learn to live one day at a time, but am living that way daily and am greatful for each day I have. My motto is "I may have scleroderma, but it doesn't have me." :)
I may have Scleroderma, but Scleroderma doesn't have me!

#13 Karenlee

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Posted 09 April 2008 - 03:55 AM

smac, I love your positive attitude. It inspires me not to get so into the disorder and get me down.

And bravo on your motto. I may have to steal that one from you! :)

My nephew has Autism. My sister has been thru the ringer trying to deal with all that comes with it. She always insists " he is not autistic. He has autism". Another motto that I beleive in. We should not define ourselves as people by our disorders.

Anyway thanks for sharing.

Karen

#14 Charmaine

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Posted 28 April 2008 - 11:28 AM

From what I have been told by my rheumatologist, a negative test of any sort (ANA, some sclero test, and a couple of others) doesn't necessarily mean you DON'T have the condition! It's just a tool.

charmaine