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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 coweyes

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Posted 13 November 2008 - 09:46 AM

Hello! I am a new member and wondered if anyone else had similar experiences or any suggestions.
I am a 30 yr-old mother of 2 and recently received a scleroderma/lupus diagnosis. Unfortunately, I have not tested positive for the DNA markers, but have the elevated ANA and CRP. I also have Raynaud's, Barrett's, osteoarthritis, hypothyroid, & adenomyosis. My rheumatologist referred me to a GI doctor who specializes in autoimmune disorders that affect the digestive system.

After the esophageal manometry, he said that I have moderate involvement of the esophagus, consistent with scleroderma. He said that there are some people who have scleroderma without the DNA markers. ? He thinks I might also have an underlying lupus additionally, since I get the 'butterfly rash' on my cheeks and nose, which seems to be coming more than going lately. I have had a pulmonary function and echocardiagram, both I was told were normal.

I have had a lot of joint pain, especially in the hip. I had a X-Ray done in August, and in October, my rheumatologist reviewed the findings and it showed a femoral head flattening. I had to see an orthopedic surgeon for possible hip replacement and was told the hip likely had a tear in the cartilage surrounding the hip socket. Waiting for the MRA to confirm this diagnosis. But I saw the X-Ray and a previous one from April and the recent X-Ray showed the head was flat, like 90-degree angle flat. When I pointed this out to the surgeon, he said it was the angle, but a very similar angle from April didn't look anything like it (Oh well I am lawyer not a doctor, Jim!) The Ortho doctor also said I had pretty bad arthiritis in both hips, but I am not being treated for that.

I only take Plaquenil for fatigue (started in Oct.), Aciphex for Reflux, and a prescription pain reliever for my hip pain (it has gotten really bad lately). I have been getting a lot of ear infections, which I haven't had since I was a kid. Has anyone else had ear infections that might be reflux related? I have also noticed lately that my some of my fingertips (at the first joint below the nail) are turning up and a couple are twisting off to the side? Is this common with scleroderma? I would appreciate any thoughts.

#2 janey

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Posted 13 November 2008 - 10:09 AM

Coweyes,
Welcome to the ISN forum! I'm sorry you have joined us due to a recent diagnosis scleroderma/lupus. Sounds like you are going through a lot right now with testing and trying to figure out what is and what isn't going on. Sorry to read about all the problems with your hips. I hope the pain reliever is helping to reduce some of the pain from that.

I'm sorry but I can not offer answers to your specific questions related to DNA markers and ear infections. I've never had my DNA tested nor have I had ear infections. However, we do have a section on DNA and scleroderma. You might find some information in this research. From what I read, not everyone with scleroderma has a specific DNA marker OR particular antibodies for that matter. DNA testing and antibody testing is not 100% full proof. There are always exceptions.

There may be others that have had ear infections that will chime in. I trust you get lots of information. Glad to hear the heart and lung tests came back normal! That's a great thing!

Please stay on top of all of your symptoms and keep the communication open between you and your doctors. It's so important to work with the doctors and to make sure your doctors are working for you. From what you wrote, it does look like your doctors are trying to find out what's going on. Please keep us informed, and if you have any questions, please ask!

Big Hugs,
Janey Willis
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#3 gigi08

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Posted 13 November 2008 - 11:01 AM

I can't recommend anything since I am new at this and still learning. I do love reading what others have to say and have received a lot of info on this forum.

I can tell you that I take the plaquenil and the aciphex and ibuprophen 800 mg. for pain. Nothing so far helps the pain in the hands and wrist. The ends of my fingers are swollen and bending down and also twisting to the side. My right hand is worse then the left. Today they are very painful and it even bothers me to type. I'm assuming this is from the scleroderma but would love to hear what others say about it too.

Gigi
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#4 Amanda Thorpe

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Posted 13 November 2008 - 12:57 PM

Hello Coweyes

Welcome to this great forum packed with people eager to share the knowledge and benefit others.

Scleroderma can cause changes to the hands which can differ from person to person. I have contractures which means the fingers are bent over at the knuckle, the middle one and a couple are starting to bend at the first knuckle below the nail. However I also know people with scleroderma who experience hand swelling and nothing else 10 years on.

It sounds like you have a good medical team behind you which is a major plus!

Keep posting and take care.

Amanda
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#5 canon

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Posted 13 November 2008 - 06:24 PM

Hi coweyes,

Sorry you are going through so much. Wanted to welcome you to the Forums and tell that you have found a great group of people.

You have been hit with quite a few things. We sound pretty much the same in diagnosis. My GI and Raynaud's started in my 30's and I am now in my 50's. I was finally diagnosed this past year with a firm systemic sclerosis however I was also told I have had scleroderma for a long time. I also have Barrett's, hypothyroid with graves disease, livedo reticularis, osteoarthritis, anticardiolipins but no lupus or adenomyosis. Believe me it was the most maddening time of my life especially the past 8 years mostly due to no set diagnosis. They keep adding things as time goes on and or things just keep happening.

As for symptoms my fingertips turn down and twist and some turn down and twist from the middle knuckle and some do both. The swelling on the fingertips I was told is osteoarthritis and the rest of the hand swelling is scleroderma. I do get calcinosis sores on my fingers but no ulcers yet from Raynaud's. The methotrexate and plaquenil has helped a lot. I think the methotrexate kept things at bay for a few years. If my dry eyes don't clear with the drops, may have to give up plaquenil due to corneal problems. <_< . Have not had ear infections lately. A few years ago I had them a lot but no one suggested the reflux. Have laryngeal problems from reflux. I have hip and knee pains but no erosion of joints and so sorry about your hips.

They have not done DNA testing but always test for anti DNA, it is some kind of lupus marker I think. It is always negative.

With gentle thoughts.

Judy
A happy heart is good medicine.

#6 Sheryl

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Posted 14 November 2008 - 12:45 AM

Coweyes, I would like to welcome you to the Sclero Forums. Sounds like you already have your plate full with symptoms. The knuckles jutting up and sideways is part of the Arthiritis that comes along with Scleroderma for many of us. I'm not a physician but that appears to be how it developes in most people. I hope you enjoy our group. We try to give advise to others if we are familiar and knowledgable with what is going on, since all our symptoms are very different yet so much the same, at different developing stages. I'm glad you joined our group, to learn and share.
Strength and Warmth,
Sheryl

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#7 Snowbird

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Posted 14 November 2008 - 03:06 AM

Coweyes

I can't add any specific answers to your questions but also wanted to welcome you. You have come to a great place for support and answers!
Sending good wishes your way!

#8 razz

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Posted 14 November 2008 - 05:04 AM

Coweyes,

Welcome to our ISN forum! I like your name, very catchy. I have had a couple of ear aches but I think they most likely were connected to my tooth aches. As soon as my tooth aches went away, so did the ear pain. As for twisting fingers, my index fingers both have twisted slightly to the left. This I definitely I credit scleroderma with. I am glad you find this forum and are getting good treatment from your doctors.

Hugs,
Razz
Live well, Laugh often, Love much

#9 coweyes

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Posted 14 November 2008 - 07:30 AM

Thanks to everyone who has replied to my post!! It is nice to know that I am not alone on this 'journey'!

Sarah

#10 Sweet

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Posted 14 November 2008 - 08:16 AM

Hi Sarah and welcome!!

I'm so glad you've joined the Sclero Forums. I'm sorry for all that you have going on. You and I have a lot of similar complaints. I understand how frustrating and depressing it can all be at times.

You've come to the right place for information, support from those who really "get it" and for great friendship. I look forward to knowing you better.
Warm and gentle hugs,

Pamela
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#11 pieski

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Posted 15 November 2008 - 07:49 AM

Hi,
I feel your hip pain! My hip has hurt for about 5 years now. I had an x-ray years ago that showed nothing. I mentioned it to my rheumatologist. last visit and he did a weight bearing x-ray, which showed osteoarthritis and he said I would proboably need a hip replacement in a few years. I spend alot of nights sleeping on the floor because that is the only way to relieve the pain.
~ Teresa~