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I saw my dermatologist today. I told him I had stopped using the Dermovate, as it was causing the veins to bleed along the line. I only use it on my legs, from crotch to knees, which have deep morphea 1/4 the width of my thighs. On my arms the deep morphea is 1/2 the width of my upper arms. I use coconut oil, because the ointment would be in contact with my mouth, as I sleep :-)

 

He is to start me on UVA treatment. He said he could give me tablets, which I refused, because of my adverse reactions to so many medications and I asked if the morphea is going to go into remission. HE said it will never. I then asked about internal problems, he said I have none as the Scl-70 and ANA are normal. How does he know this, he has NEVER asked me about any medical problems. I had GERD 2 years ago and had to have voice therapy and was unable to talk, without taking a sip of water, even to say a few words. I have COPD and recently diagnosed with heart murmur, also occasional numbness in both legs.

 

I don`t want to have internal problems but would like to know for sure, that I don`t.

 

One confused girl here :( after all that I have read.

 

Do I refer myself, via my general practitioner, to all the other departments.

 

Help,

Lynne


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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Hi Lynne,

 

It sounds like you have quite extensive patches of morphea. Have you considered going to a scleroderma expert?

 

Please keep in mind that I am not a doctor and feel free to correct me if/when I'm wrong about anything, as I often am!

 

Generally speaking, as I understand it, morphea affects only the skin and not the internal organs; it is very different from systemic scleroderma. However, about 25% of people with morphea do experience one or two symptoms outside of just the skin involvement (such as GERD). It is very rare, and some scleroderma experts will say, never or impossible, for morphea to develop into systemic scleroderma. However, this still leaves a person with morphea vulnerable to every other disease there is, including other autoimmune diseases. About the only good news is that there is a normal life expectancy for people with morphea, but it does not mean that it will be walk in the park (as you've already discovered) or that it will be easy to find a good and effective treatment program.

 

But, it is an excellent point that he has never asked you about your other symptoms or illnesses. So you may want to read up about Morphea Complications on our main site, and see if it's possible for you to see a Scleroderma Expert to review your treatment plan.


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.

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Thank you Shelley,

 

I thought I was seeing a specialist!. . . I didn't mention, that he diagnosed me with CREST.

 

The only places, without the morphea are my head, back, feet, and buttocks, those on my face, flank, lower arms, and lower legs are the flat oval linea type.

 

I have cut off the feet from tights, to cover my inner thighs, because they got red raw

 

Do you remember "Corned beef legs" from sitting in front of the coal fire? That's what I look like now :-), until the lilac ring goes.

 

I think I will go and see C Denton, I hear good things about him.


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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Hello Lynne

 

Nice to see a photo, now I know what you look like!

 

Yes Prof Denton is excellent, not only in ability and knowledge but in the way he treats his patients.

 

Now your diagnosis is limited scleroderma (CREST) you may need to have a lung function test and echo just to make sure all is well. A negative ANA appears to have no bearing on whether the disease becomes internal, I have a negative ANA but scleroderma has effected my heart.

 

Pursue your appointment with Prof Denton and that way you can be sure you're getting the very best treatment available.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Lynne,

 

Well, as you know quite well, CREST and Morphea are two entirely different things, one being systemic and the other being localized. This makes it all the more important that you see a scleroderma expert to sort out the diagnosis and get you on an optimum treatment plan. Prof. Denton is truly fabulous and a world scleroderma expert. He co-authored the lead article with Prof. Carol Black in our book, Voices of Scleroderma Volume 2.

 

You'll be in great hands!


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.

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Thank you Amanda and Shelley, Very good advice.

 

I have just got off the phone and have an appointment with Prof. Denton in early June.

 

I will keep you all advised as to how I get on.

 

I must say, when first reading all everyone has had to say, I was very frightened but took a deep breath and told myself, I am the same today, as I was yesterday, when I knew nothing.... So get on with it, girl, and make the best of it and do what you can, to improve life.

 

I joined a "Fit for life" course yesterday and am exercising to increase my movement, so I don't seize up altogether. I have also asked to have UVA, which will start in a few weeks.


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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Hi Lynne,

 

I believe you have every right to feel concerned about your dermatologist.

 

Do you have an internist or general practitioner who sees you? Usually, they take care of the labs, etc, so it might be prudent to make an appointment with that doctor, so you can discuss your concerns.

 

Please let us know how all goes, Lynne?


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Susie,

 

Thanks for your advice. Sadly, my general practitioner knows absolutely nothing, about CREST, Morphea :-) I am enlightening him, as I go. He is a good doctor and I am sure he has by now read up on the illness. He is going to give me copies of all my aliments and blood results, for the past few years, for me to take to whoever needs to know what has been going on.

 

I feel so pleased I found this site, I would have been a jibbering wreck without it.

 

Thank you all, so much for being there, for me and everyone else.


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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Hi Lynne,

 

I'm chiming in late. You've already gotten great advice. :)

 

Having lived in both the UK and the USA, I know that procedures to order more extensive testing are different. I can't tell you how to get the tests, but I can tell you which ones were ordered for me in the beginning.

 

They started out with all the usual blood work and urinalysis, a chest X-ray, an extended chest CT, a full pulmonary function work-up, including an exercise to maximum capacity test, arterial blood gases, 6-minute walk, a 24-hour GI pH-impedance test, barium swallow, echocardiogram, bubble echocardiogram, electrocardiogram, a test for lung diffusion/perfusion, laryngoscopy, nocturnal pulse oximetry, and a right heart catheterization.

 

It's almost certainly unusual to get all that right off the bat, but I was fortunate enough to go to a center of excellence for autoimmune diseases (it also is a research center) and I presented with symptoms that warranted the testing.

 

I think I'd mention the most common/serious potential systemic complications to your general practitioner and see if you could be screened for those.

 

Best wishes and warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Lynne,

 

Yes, you do get time for lunch - it comes with barium and they want to watch you swallow it. I'd particularly recommend the crackers with tasty barium spread. :lol:

 

Big hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Mmmmmmmmmmm, my salivary juices, are running, bring it on


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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