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Biomarker for Diffuse Scleroderma skin has been discovered!


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Newly Diagnosed - Possibly CREST


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#1 fjperry

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Posted 11 March 2010 - 05:02 PM

Hi - My name is Felicia and I've been diagnosed with Scleroderma late 2009. I also have gastroparesis (diagnosed Feb 2010). I was originally diagnosed with Raynaud's, which triggered test after test after test. I went to every kind of specialist possible, trying to get a different result than what my rheumatologist gave me.
I've exhausted all possible options of getting a different answer. I'm so very scared.

I'm 41 with a 1st year college student (daughter) and a 7 year old son. I've sheltered myself from the rest of my family. They're in denial too and it doesn't help me! The emotional strain spills over into my job.

I have the discolorations in my face, chest, and back. I have scaly skin on my thighs and arms. My mouth doesn't open as wide. For the first time since 1986, I have cavities (multiple) and periodontal disease. I've always been very good with my dental hygiene.

I'm going on and on because I'm panicking right now. Sorry. :(
:(

Anything anyone can tell me will be very appreciated! Although I have no idea what I'm looking for.

Felicia

#2 janey

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Posted 11 March 2010 - 05:27 PM

Felicia,
I'm so sorry to read about all that you are going through. Going to specialists and getting second opinions was definitely the correct thing to do. I'm sorry that they all seem to have provided you with the same diagnosis. You didn't mention any treatments. How are they treating you disease? What are their plans for slowing the progression of the disease? The day I was diagnosed, I was put on an immunosuppressant and saw results within weeks. I hope you have a doctor that you have a good relationship with that is working on your behalf.

High anxiety, denial is so common for the initial diagnosis. What you are going through emotionally is very familiar. Because stress can only made your physical symptoms worse, it is important to reduce the stress and anxiety if possible. We do have a section on emotional adjustment that might provide so ideas for you and your family.

Please make sure your doctors know of all of your symptoms as well as how you are doing emotionally. It all works together. We here at the Sclero forums will provide as much virtual support as possible, so please visit us often. I look forward to learning more about your treatments and how things are working for you.

Welcome Darlin'!
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#3 jillatk

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Posted 12 March 2010 - 05:02 AM

Felicia,
Yup, the first few months of this can be quite disorientating and terrifying. Hang on girl, you will get through it and it will get better, I promise. So one of the ways it will get better is to start talking about it. You have got to get supports around you comfortable talking about it and living with the things you now need to work around. For instance, I am constantly dropping things because my fingers do not always do what I want them to. All my friends and family just chuckle and help me clean it up - no one is upset or disturbed by this. It is just the new normal for me. It is important to remember that this diagnosis is not a death sentence - even though there are lots of materials on the internet that paint a bleak picture, you will find many folks on this forum who have had this disease for many years and still have a great life. With proper treatment many of your symptoms will improve. There for sure will be some tough days, but it will not be every day. Also, this disease tends to take a break from time to time. There is lots of hope - you just need to find it.

Jill

#4 pinnygig

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Posted 12 March 2010 - 06:01 AM

Hi Felicia,

I would echo what everyone else is saying. I was also given my 'diagnosis' in Nov '09, and unfortunately it was by a consultant who refused to tell me anything about it so it 'wouldn't worry' me!? As a consequence I trawled the internet and was utterly convinced there was no hope for me, particularly as I have the antigen indicating diffuse scleroderma.
Well....a few months on I feel a million times better. I have spoken to many other people with the condition, and whilst it's far from easy, I'm nowhere near as scared as I was and I'm optimistic that whatever I'm hit with next I'll handle it when it happens.
I am now under the care of a rheumatologist who is very thorough and inspires confidence (half the battle I think)and I'm actually almost relaxed about it all now!!
I know exactly how you feel about your mouth issues. When I was very ill last year, my gums were horrendous. I was beyond mortified as I have always been very proud of my fine set of gnashers and the standard of my dental hygiene. Importantly though, it passed, and I'm sure as you start to recover from the stress a little more, things will improve for you too. (My mouth is now back to it's former healthy glory).

Hang on in there. The picture is nowhere near as bad as you may read on some of those scientific articles.
All the best x

#5 Joelf

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Posted 12 March 2010 - 07:34 AM

Hi Felicia

I'm so sorry to read of your distress over your Sclero diagnosis. Please don't be scared; as Janey and Jill say it really will get better especially if you can talk to others around you and also glean as much information about the disease as you can.....knowledge is power!! ;)

I was diagnosed with LSsc in about August 2009 and it actually was rather a relief to know exactly what the problem was as I had been feeling so dreadful up to then and had convinced myself that I was going to die :rolleyes: as I had never experienced anything like it before! I promise you that there is life after Sclero and a good life at that!! :)

Do post frequently when you feel the need to share your worries and concerns; there will always be a knowledgable and understanding ear to listen to you. :emoticon-hug:

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#6 Amanda Thorpe

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Posted 12 March 2010 - 08:58 AM

Hello Felicia

Welcome to the forum and to the weird 'n' wacky world of scleroderma!

I am into my 3rd year with diffuse sclero, last year I joined the gastro club and this year I am having investigations into heart involvement. Next year...who knows but whatever it is I'm ready!

The beginning bit it always the worst because you have everything to get used to. That's where having diffuse was a bit of a bonus because everything came on so quickly I didn't really have time to think about it. One month I had skin tightening on my calves, 6 months later it was everywhere and I could hardly walk.

The good news is that it can get better, not just symptoms but the way we handle it. It's normal to be overwhelmed at the start and for family/friends to feel the same way. It helps to know about the disease and I recommend that you source your information from this site as some of the stuff out there is inaccurate and hysterical. Also talk about it because it makes it feel smaller and more manageable.

Finally I recommend that you post often so you can get all the support you need and you'll be amazed how quickly things turn and you become the one giving support to someone new struggling to come to terms with scleroderma...then you'll be one of us and we're glad to have you. :happy-day:

Take care.
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#7 fjperry

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Posted 12 March 2010 - 09:00 AM

Hi, Jill

Thanks for the inspiration. I want to start by saying that I am African-American. It seems to make a difference when looking at pictures on the internet for skin discolorations. Actually, I haven't seen any pictures of minorities with Sclero. Is that typical or lack of information?

My hands are very swollen. I also have problems picking up and holding onto small things. It's more irritating than anything. I've always been clumsy :wacko: so that isn't anything odd for my family and friends to see. :rolleyes: At first, I thought it was because I gained a lot of weight on a medication (non-Sclero related). However, once I got off, my hands are still swollen. I went from a size 5 ring to an 8! So, forget wearing any of my jewelry.

My hands have also become very dark, which really made me concerned and was a part of why I went to the doctor 1st. But, at the time, I thought that was my only issue. Recently, they've lightened up a little.

They peel (I guess that's the right word), and I made the mistake of picking at them. I've always liked picking at things. It's like a compulsive disorder! The tips get very cold and hurt sometimes. I haven't seen the peeling as much lately - maybe because I've learned to try to keep them as warm as possible?

I'm definitely trying to make things better.

Felicia

#8 fjperry

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Posted 12 March 2010 - 09:10 AM

Hi, Janey -

No, I'm not on any medications for it. The doctor I started out with doesn't want me to start any since I am taking a lot of meds for bi-polar disorder. I've only seen him once, because I've been trying to see all the other specialists.

I'm making a follow-up appointment, hopefully for next week. My doctor told me that the meds for Sclero are toxic, which is also a reason for him waiting. He said he only wants to do it if it gets worse.

I'll let you guys know what he says after my appointment.

Thanks for all of your support.

Felicia

#9 fjperry

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Posted 12 March 2010 - 09:18 AM

Hi, Joelf -

Thanks! I'm happy to hear that you've gotten past the fear. Maybe I'll get to that point soon.

Do you know how long it takes for it to start attacking your organs? That terrifies me and the fact that it can be very progressive when it reaches that point.

I can't wait to be where you are & know that there is life after Sclero.

Take Care,
Felicia

#10 fjperry

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Posted 12 March 2010 - 09:38 AM

Thanks, Amanda.

It's nice to hear how you're dealing with it. Is your walking better? I hope so.

I mentioned that my skin was scaly and now that you mentioned the tightening that is happening to me too, mostly on my face. I also have another symptom - itching.

Everywhere I have the scaly skin, it itches like crazy! I've tried moisturizing lotions and Vaseline. Neither seems to work very well, although the Vaseline works a little better. Any suggestions? Is this typical? The last doctor I saw was an Oncologist. He said that my skin is peeling where the discolorations are located. Is peeling
the right word for the lighter colors?

Also, have you had any problems with knots? My face is 3 different colors and around the perimeter of it, I feel little knots and they itch also. Is this typical?

Any help/advise you can give me would be very helpful.

Thanks again,
Felicia

#11 Sweet

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Posted 12 March 2010 - 10:10 AM

Hi Felicia,

Welcome to our family. I'm sorry to hear about your recent diagnosis. I panicked as well when I was first diagnosed 10 years ago. As time goes by, and you learn more, take one day at a time, that panic eases up.

It's really hard to know how fast the disease will progress with you, as everyone is different. I'm surprised however, that your doctor has not started you on any medications. Plaquenil is usually the first line of treatment. It takes a couple of months to kick in, but it can slow the progression of the disease, and in some instances halt it altogether. It also helps with pain and fatigue. Please ask your provider about it.

In the mean time, check in often, ask questions, and know you are among people that truly understand what you are going through!! Again welcome :flowers:
Warm and gentle hugs,

Pamela
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#12 Amanda Thorpe

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Posted 12 March 2010 - 11:03 AM

Hello Felicia

Unfortunately itching is common and can be associated with the skin tightening, it was actually one of my first symptoms and it drove me to despair! We have a page about itching which includes suggestions of creams and medications to help the itching. The good news is that the itching can lessen and even disappear completely.

Although I am not medically trained I find the wait and see stance by your rheumatologist somewhat concerning because scleroderma is a progressive disease and the idea is to treat as soon as possible to limit damage and internal involvement. Also have you had the usual round of tests to determine whether there is internal organ involvement such as lung function test, ECHO, chest Xray and CT scan?

According to the Mayo Clinic:

African-Americans. Systemic scleroderma is more common in African-Americans than it is in Americans of European descent. And the African-Americans who have systemic scleroderma are more likely to develop severe lung complications

As you are an African American you really want to make sure your lungs are okay and they stay that way so if you haven't yet had a lung function test and/or CT scan you may want to discuss this with your rheumatologist.

We have an ISN photo repository and you are welcome to submit some photos of your own.

I am pleased to say that my mobility has improved from what it was although it's nowhere near normal, I still need a wheelchair if I'm going out.

Take care and keep posting.
Amanda Thorpe
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#13 Joelf

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Posted 12 March 2010 - 11:19 AM

Hello again Felicia

As far as I understand it affects different people different ways so it's quite difficult to be specific over the timespan of the disease. My sclero has involved my lungs and the skin changes I have are actually very minimal although I do have Raynaud's and pain in my joints. But thankfully my lungs were diagnosed very quickly and I was put straightaway onto a fairly aggressive treatment of 6 cycles of IV Cyclophosphamide and steroids and the result was nothing short of a miraculous improvement. :emoticons-yes:

I think what I'm trying to say is, please don't feel terrified as even if it does involve other organs it doesn't mean that you can never enjoy your life and family again.....trust me, you will! xx :)

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#14 fjperry

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Posted 22 March 2010 - 12:21 AM

Hi Pamela -

My doctor has not prescribed me any medications yet, because I am on so many meds already (bipolar). He said he will continue to monitor me with regular appointments and we would go from there.

He also said that the options are toxic and he did not feel comfortable referring me for any natural remedies.

Hopefully, I will be able to hold off on the treatments for a while. At what point do doctor's decide to give you medication? What were your symptoms that made him to decide to start you on meds?

Take care,
Felicia

#15 fjperry

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Posted 22 March 2010 - 12:28 AM

Hi Amanda-

Thank you for the information, although disturbing :( , I need to know things like that.

My doctor and the other specialists have done extensive testing but everything comes out normal. I am not sure exactly which tests, but I will ask him. He did mention he wanted to make sure he keeps track of my kidney functions. During my next appointment, I'll ask him about the lungs.

Thanks again for the information!

Felicia

#16 fjperry

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Posted 22 March 2010 - 12:37 AM

Thanks again, Joelf!

I guess my main concern is how it will affect my children (18 year old daughter and 7 year old son). I just imagine my health deteriorating and making my daughter either not do well in school or needing her to help me with her brother. I don't want to put that on her. I've heard so many stories about children putting off their dreams to care for their parents. Although commendable, I don't want to put her in that situation.

And, of course, I think about the worst case scenario of dying and leaving them here by themselves. If it was just me, I could accept that better. But it's not and it terrifies me! :crying:

I will continue to be involved in the forums, because you guys have been great - very helpful and inspirational.

Thank you again, Joelf!
Felicia

#17 Jeannie McClelland

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Posted 22 March 2010 - 03:17 AM

Hi Felicia,

Not all medications are all that toxic, although with many of them the doctors like a monthly blood test or two, just to make sure everything is going OK. If you feel that you should be getting other treatment you've always got two courses of action: 1) explain your concerns to your doctor and ask for a clear explanation why you are not being treated at this time or 2) seek a second opinion and if you think it is warranted change doctors. Posted Image

Now, about this dying business - sure, some of us do, but not nearly as many as some of the research articles, etc. would have you believe. There are a lot of us here on the Forum who have beaten the reported statistics and continue to do so quite nicely. One of our members knows another scleroderma patient who is in her 90's. I'm soon to be 63, have both pulmonary fibrosis and pulmonary hypertension and believe that I am incredibly healthy. I keep telling my doctors things like "I'm the healthiest person you'll see today" or "I plan on attending your retirement party (they're mostly about 20 years younger than I am)."

In dwelling on all the negative possibilities you are causing yourself a lot of stress (bad stuff, that, & really toxic) and wasting days you should be enjoying. Worrying is like buying insurance on a house you don't own.

I'd recommend that every time one of these frightening, negative thoughts intrude into your mind, say firmly to your self "NO!" and go accomplish a task you don't like (in my case it's usually cleaning the bathroom). I found my mind was a bit like a Border Collie puppy - it needed a lot of training, a lot of positive reinforcement (I'm going to live to be as old as my mother (89) and as wrinkly, stubborn, and independent as she is) and a lot of distracting (the bathroom's clean, what's the fridge like?!) For a while there I had the house so clean my kids thought I had been body snatched! Now I've got myself calmed down and accepting that while I will die, because everybody does, I could just as easily be run over by a bus as die from scleroderma. I'm often obnoxiously cheerful and the house is back to its normal untidy state.

So, Sweetie, get a grip (as my husband would say) and go bake some cookies for your kids. Even better, do it with them. Baking cookies with a 4-year old is wonderful medicine!
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#18 Sweet

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Posted 22 March 2010 - 09:51 AM

Hi Felecia,

My Rhuematologist, gave me Plaquenil on the first day he saw me. I had symptoms of Raynaud's, GERD, and fairly bad joint pain, along with significant blood work showing that I had scleroderma. Plaquenil can cause problems with vision so I have to have regular eye exams. I've been on it 10 years and no problems!
Warm and gentle hugs,

Pamela
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#19 Margaret

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Posted 22 March 2010 - 01:33 PM

Hi Felicia ,

I want to welcome you to the group and comment on the fact that your doctor doesn't want you on other meds because of your bipolar meds. My own son was on meds for OCD (Lexapro) and Risperdal (for SIB - Autism) prior to his diagnosis of sineScleroderma/UCTD. He was started on Plaquenil and it did not interfer with his 'brain meds', as I call them, and his symptoms subsided after several months. Also, the same autoimmune response that is attacking your body can mess up the chemicals of the brain --- causing autoimmune depression. I would strongly suggest that you see a Sclero doctor and a Psychiatrist that is familiar with autoimmune diseases.

Take care, Everyone.
Margaret

#20 Lynnie

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Posted 23 March 2010 - 02:54 PM

Hi Felicia,

Welcome to our world. Please don't be scared. I was just like you, we all were. I was given the diagnosis last year, and like all who have replied earlier, I totally agree with them. But one of the most important things is to get a good rheumatologist. If you're not happy, see your family doctor and tell him your concerns and ask for another opinion. These relationships for us are not counted in months but years and are VERY important. I've been put on immune suppression early, as was advised earlier the sooner treatment is started the better the chance to prevent further damage to our delicate bodies. Take control of YOU and what YOU NEED. It's your body and your right to ask for the best care available for you.

Hugs and warmth,

Lynn :emoticons-yes: