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Biomarker for Diffuse Scleroderma skin has been discovered!


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MRI Results


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#1 amberjolie

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Posted 09 August 2012 - 08:03 PM

Got my MRI results, but without yet speaking to the rheumatologist about it. Got them from my family doctor, who didn't feel qualified to interpret them.

But essentially while I have "mild myositis", it says I have "moderate fasciitis". Anyone have this or know how it relates to scleroderma? I can't seem to find too much on the internet. Then the recommendation was made that I get a full thickness biopsy to confirm the diagnosis. I really didn't want one of those! I also can't see that fasciitis leads to elevated CK levels.

I see a neuromuscular specialist towards the end of the month, so I'll make sure he gets a copy of this.

#2 debonair susie

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Posted 10 August 2012 - 09:24 AM

Hi amber,

While I'm glad you got "some " information about your MRI, I hope your neuromuscular doctor can ease your mind a bit more, with his/her enlightening you as to what is what.

Thank you for sharing what you have so far and hope all turns out well, once you see the neuromuscular doctor.

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#3 Joelf

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Posted 10 August 2012 - 09:35 AM

Hi Amberjolie,

Well, I've found a link to our medical page on Eosinophilic Fasciitis (Shulman's Syndrome) which I hope will give you some more information but I think you will have to ask your rheumatologist and/or your neuromuscular specialist to interpret your results for you.

I do hope that you won't need to have a full thickness biopsy.

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#4 Amanda Thorpe

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Posted 10 August 2012 - 04:37 PM

Hello Amberjoile

I was diagnosed with fasciitis, never paid much attention to it, had bigger fish to fry namely scleroderma. I found it defined as an inflammation of the fascia and fascia is the thin layer of connective tissue underneath the skin. If it's an inflammation of connective tissue no wonder it's found in people with scleroderma!

Take care.
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#5 amberjolie

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Posted 11 August 2012 - 12:21 PM

Yes, the results said that it could be due to eosinophilic fasciitis, generalized morphea or scleroderma, and that he felt a full thickness biopsy would help with the diagnosis. I don't know if that's necessary - I already had a skin biopsy which showed scleroderma, and various online sources say that eosinophilic fasciitis doesn't affect the digits or cause Raynaud's. I definitely have digital involvement, and currently am just getting over two very painful digital ulcers! So I can't see how it would be anything different than the scleroderma.

My question to her would be: what is causing the CK levels to be so high? The myositis, even though it was seen as mild on the MRI?

But you're all right, I have to just be patient and wait to see what they say. I'm going to call my rheumatologist though to confirm that I should still see the neuromusclar specialist. Would hate to spend time at yet another doctor only to find out I needed to see someone different, or it was not needed.

#6 Sweet

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Posted 14 August 2012 - 10:44 AM

I've been told I have both. Basically it's just muscle and facia inflammation. My rheumatologist told me it was nothing to worry about, just a symptoms of Scleroderma. And in Answer to your question amberjolie, yes it will raise CK levels.
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#7 Shelley Ensz

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Posted 22 August 2012 - 09:50 AM

Hi Amber,

Just as Sweet indicated, scleroderma can affect the muscles and cause elevated CK levels.

"CK/CPK is checked in scleroderma when there's a complaint of muscle weakness and could indicate muscle inflammation." -- AllExperts.com

So it sounds like your doctors might conclude that you have some muscle inflammation due to scleroderma, right now. The fascia is just beneath the skin, and surrounds the muscles, and it can become inflamed due to scleroderma, too.

Elevated CK levels can also be caused by exercise, or even statins (medications for high cholesterol), so if you are on a cholesterol medication you'd definitely want to discuss it with your doctor, and you'd probably want to chill on the exercise (if any) until you are given the go-ahead by your medical team, however I'm sure this is ground your doctors have covered with you already.

I hope you feel a bit better soon. Keep us updated on this, will you?

:emoticons-group-hug:
Warm Hugs,

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

#8 amberjolie

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Posted 24 August 2012 - 07:23 PM

I have an update. I saw the neuromuscular specialist yesterday who did an EMG - yuck, but it wasn't quite as bad as the other one I had. He mentioned a biopsy, but I asked what it would show, and he just said it would confirm diagnosis.

As far as I'm concerned, there isn't anything to confirm. I know I have scleroderma, and since treatment of muscle issues is the same regardless, I decided not to get the biopsy. Yay!

The EMG did show a little of something in my deltoid, but apparently nothing big. And he didn't really comment on the MRI results, but he did say that I had "inflammatory myositis", and not to do any major exercise.

He said I would have to discuss treatment options with my rheumatologist, since the methotrexate doesn't seem to be doing anything.

So all in all, not too much information obtained from this doctor. I guess I keeping hoping that one of these doctors will say "Aha!" and have a magic pill that will take everything away...

I'm seeing the rheumatologist on Tuesday, though, so I'll see what she has to say.

#9 Joelf

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Posted 25 August 2012 - 09:01 AM

Hi Amberjolie,

Thanks for letting us have the update on your EMG and I'm glad it wasn't as bad as you feared.

It's good to hear that you won't be needing to have the biopsy after all; it must be a relief for you! I do hope that your rheumatologist can sort out a satisfactory treatment and exercise plan for you, when you have your appointment on Tuesday.

Should she come up with a magic pill such as you describe, please put my name down for one as well!! ;) :lol:

Kind regards,

Jo Frowde
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#10 Shelley Ensz

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Posted 27 August 2012 - 12:39 PM

Hi Amberjolie,

As I understand it (and please bear in mind, I have no medical training at all, and I'm probably wrong lots more than I'm right, about nearly everything!), inflammatory myositis can mean a whole range of things, including dermatomyositis and polymyositis, which as you may know also tend to show up at the scleroderma-family gatherings of illnesses.

Unfortunately most myopathies are not curable, however they are usually treatable. You will definitely want to sidestep any invitations to a marathon, or even a good brisk walk, until after you learn more about your specific condition from your rheumatologist.

I'm sending some extra warm -- but very gentle! -- hugs your way.

:emoticons-group-hug:
Warm Hugs,

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

#11 Shelley Ensz

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Posted 06 September 2012 - 12:29 PM

Amberjolie, have you met with your rheumatologist yet? If so, how did it go?

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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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.

#12 amberjolie

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Posted 06 September 2012 - 07:43 PM

Hi Shelley,

Yes, I did see her and I have another post on that called "Remicade and visit to Rheumatologist" with whatever follow up info I had.

Thanks for asking!