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New here--fingers curling under

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#1 marjimaybe



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Posted 15 May 2008 - 04:54 PM

I'm new and have some questions about scleroderma. I'm currently diagnosed with secondary sjogrens and have bad scoliosis, always elevated ANA with speckled pattern, positive for anti-cardiolipin antibodies, vitiligo and hyperpigmentation, diabetes,removed salivary glands and lymph nodes in neck, lots of scarring, calcifying lymph nodes, inflamed lacrimal glands, stiff muscles, thick skin, polyendocrin dysfunction incl. hashis hypo, and Non alcoholic steatohepatitis, neck surgery for canal stenosis, spondylitis, degeneration, general joint problems, abnormal emgs, mild heart atrophy.

I am going through the mayo thing and the rheumatologist is saying I have connective tissue disease, but he also noticed I can't straighten my pinkies. I thought the swollen feeling was from edema, but it is not, it is hard, like the underlying tissues have atrophied. My arm muscles are hard and painful as are my legs. I notice this is moving on to my ring fingers within a week.

Funny thing is that as awful as I feel right now, my complements and ANA is relatively low at 1:40 and my sed rate and CRP are low for once. My platelets have been borderline low repeatedly though and maybe that is way, I don't know.

My emgs have shown increased repetitive potentials-- the nerves keep telling the muscles to contract even though they are stiff. I'm still pretty flexible.

I seem to have elements of rheumatoid arthritis, scleroderma type changes, muscular/nerve problems, and sjogrens so I don't know what will happen. They believe it is too early to tell what kind of disease I have yet.

One factor is that I was mistakenly treated with alphainterferon--an immune system BOOSTER-- for my liver when I had autoimmune disease, this caused my autoimmune disease to be worse. I had a horrible time on it and lost my reproductive organs and it destroyed my endocrine system even worse than it ever was and it hurt my liver.

1. When I try to straighten the pinkies, and I can't all the way, my hand tremors back and forth from pinky to thumb and it is frightening. Is this something that is like scleroderma hand changes? Both hands are curling under and the ring fingers are doing it too and the middle fingers are going crooked I can't straighten them on one side and the other side is getting bad. No heat or pain, I didn't even notice they were that bad.

2. Do you have to pass all the blood work for scleroderma, or are there people who don't have all the antibodies but still may have it. I test negative for SSa SSb antidsDNA but always have elevated ana speckled.

3. The rheumatologist is looking at Rituxan for me. Would this make scleroderma worse?

4. Are pigment changes part of scleroderma?

5. I have been diagnosed with a lower esophageal ring and when my last submandibular salivary glands and lymph nodes were removed, the surgeon said there was an extraordinary amount of scar tissue and mentioned scleroderma.
Can they make a mistake and misdiagnose the changes in the esophagus as a lower esophageal ring?

6. Should I seriously discuss scleroderma with my doctors and get tested?

7. Can the damage be prevented or will it run it's course regardless.

8. does scleroderma hurt the lymph nodes, liver, nerves, and muscles? Pain and heat in knees, one at a time, and shoulders and wrists one at a time. Stiffness in spine, can't stand up?

Thanks for any help you can give me. I know no one here can diagnose me, I just wonder if others share some of my same symptoms and if I may be developing scleroderma or scleroderma type symptoms.

I'm worried I'm going to end up in a wheel chair if they don't slow this down. I don't want to take the wrong meds or neglect something. My hands worry me because I type. Any help would be greatly appreciated.

If anyone has pigment changes along with scleroderma, I would be interested, because the doctors at Mayo seemed to be well aware of my cluster of symptoms and about the pigment changes and how they occurred bilaterally in the joints, and seem to know about prognosis, though they seem to have no name for the condition. I would like to know if it is common with scleroderma. Also, my skin is thick and shiny on my shins and hands, putting in ivs is difficult.

Thanks for any help and I wish you all the best.

#2 Sheryl


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Posted 16 May 2008 - 12:32 AM

Marjimaybe, I would like to first welcome you to the sclero forums. You will learn so much reading everyone's replies not only to you but to others. We also have a great medical page you will want to check out. Wow! you have been hit hard inside and outside your body.

Please keep in mind I'm not a doctor, and have no medical training at all.

1. You can do hand exercises to help keep your hands from severe curling. You can go to therapy and they will help you with exercises, heat and hand conditioning. Now, constantly try to keep your fingers flat and stretch them on a countertop or table. Your pinkies and ring fingers you can pull on a bit and try to stretch them but it may be too late and the curl you will learn to live with.

2.You can still have scleroderma and have negative results on your tests.

3. Someone in the forums may be taking Rituxan and can give you information on its benefits.

4. Pigment changes are one of the symptoms of scleroderma. Not everyone has it happen to them but several people say they look like they have a permanent tan.

5. I am not qualified to answer that question for sure.

6. Yes you should have the scleroderma screening and bloodwork done by a scleroderma specialist.

7. Some things can be prevented if caught quick enough. Other things will happen when you are in a flare that there is no control of and you have to let it run its course.

8. The answer to that is yes. It is a systemic disease. If you are going to a rheumatologist at Mayo clinic they are in the know. The rheumatologist should be a scleroderma specialist, that is important.

I am so sorry you are going through this. It sounds to me like you might have the diffuse form of SSc (but again, I have no medical training), so I am surprised your doctors haven't given it a real name as of yet. The doctors are treating each condition as it arises and by its severity. I hope you learn what you came here to learn. We all understand and are in similar situations. As a group of strangers we have come together to help each other cope and deal with what is happening to our bodies. We share our most private feelings and emotions. We help each other and have become friends. Thanks for joining us. We are a great group of very strong fighters.
Strength and Warmth,

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#3 marjimaybe



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Posted 16 May 2008 - 01:16 AM

Thank you Sheryl for your really kind reply. As you well know, I'm a little scared now, because these hand and joint problems are relatively new. My fingers are shiny and puffy, like little sausages and hard. Looking at them, they look like edema, and I just thought that I was really retaining a lot of water, but it is so hard now, I hadn't noticed. I looked at some of the pictures of the scleroderma hands and mine look like them, though not as bad as some, but the puffiness and changes are very similar.

I went to Mayo through liver transplant and thankfully I don't need one, now at least, but I've made contact and can get a good diagnosis of my liver and the state its in, whether I have cirrhosis yet. The liver people sent me to the rheumatologist because of my vitiligo on all my joints and the hyper pigment and also to see if the liver was being caused by AI disease. I don't have a return visit to the rheumatologist, but have a good local one with an x-ray machine and he took an xray of my hands on the first visit two years ago, so I may go show him while it is bad.

I'm working them and I can straighten one pinky which is good.

Thanks for all the information and tips for what to do. Mayo isn't digging very deep, maybe because I'm medicare, but they may ramp it up after they all get together and talk, I don't know. I just hope I get a better diagnosis. The endocrine thing throws a real wrench in things because they make such a big deal about giving me steroids, even though I'm deficient! They say it will make it worse in the longrun, but won't put me on every other day and don't like giving me tapers.

Are endo problems also a part of this? I have antibodies to like my whole endo system.

Thanks for helping me and giving me such a kind email. I used to live in Lansing and Ann Arbor and almost bought a house near Brooklyn, it used to be an old funeral home, but we were afraid of what the dog might dig up.;)

Now I'm in Georgia.
Thanks again. Marji

#4 cordy


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Posted 16 May 2008 - 02:53 AM

WOW!! You surely are being hit with a barrage of symptoms all at once. I'm so sorry this is happening to you. It must be very frightening to have so much going on in your body at once. I'm new here too, but wanted to welcome you and tell you that you have come to the right place! Support, concern, information and friendship are just a keyboard away!
Blessings to you.

#5 Sheryl


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Posted 16 May 2008 - 05:47 AM

It is good if you are going to an Endocrinologist. Thyroid and other endocrine problems seem to affect many of us sclerodians. You are in a warmer climate than myself here in Michigan, so you should have less severe Raynaud's symptoms. It is a small world. I have one son in Ann Arbor and one son in East Lansing and one working his way south. He is in the Dayton Ohio area. We head south for the winter months. I feel so much better when I can be in the warm climates and the sunshine and heat really help. That would have been funny if you were just around the corner from me here in Brooklyn. We would have been a few miles apart. Well now you are learning to be a Southern Bell.
Keep exercising your fingers hourly or several times daily. Keep them limber and pliable. That goes for your facial muscles. Say all your vowels while accentuating each letter. Stretching your mouth and jaw as far as you can. This may help keep your mouth and lips from shrinking drastically. Do these exercises while driving your car. Anywhere just do them. You may look goofy doing them but do them. This makes it easier on you when you go to the dentist. It may also keep your mouth and lips from shrinking as much or as quickly. Enough for now. Read and Learn.
Strength and Warmth,

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#6 Guest_Sadie_*

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Posted 16 May 2008 - 06:18 AM

Marjimaybe, Welcome!We are so happy you found us! This place is full of wonderful caring people! Sheryl had some good advice. I have had diffuse for 18 years now. I live in the Dayton Oh area. My Rheumatolgest that I had at that time sent my parents and I to University of Pittsburg hospital for the Diagonsed. He thought I probably had Diffuse but wanted to make sure. So in Fall of 1990, I was diagnosed with Diffuse. It is so important to get it diagnosed as soon as possible so that it can start being treated.
Anytime you need to talk, we are all here for you!


#7 Snowbird


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Posted 16 May 2008 - 11:10 AM

Hi Marjimaybe

I also wanted to welcome you...sorry to hear you are having such a terrible time just now. I hope the doctors can help you sort this out quickly with a diagnosis so that you can get the care you need for those symptoms.
Sending good wishes your way!

#8 mimi


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Posted 16 May 2008 - 04:34 PM

Dr. Richard Burt at Northwestern Memorial Hospital in Chicago is doing amazing things with stem cell transplants (using your own stem cells) for all kinds of diseases. If he can't help you, he will guide you to anyone that can.
I had a stem cell transplant last year for systemic scleroderma. All my lung functions are better, my skin is soft and loose again. I feel FANTASTIC!!!!
EVERYONE who has a chronic disease owes it to themselves to check this out. Dr. Burt t is willing to talk to just about anyone about this.
I can help anyone who wants to learn more.
There is hope out there. There is a treatment that can get you off all those meds. It may not be for everybody, but there is a way to get your life back. I am a living, breathing example!

#9 smac0719


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Posted 21 May 2008 - 12:47 PM

Welcome Marjimaybe to the forums and to the South (Florida native here)! I can only relate to #2 and #4. I too tested negative for many of the "Sclero" blood tests, but had an elevated ANA 1:640 and a speckled pattern. I have hyperpigmentation and thick tight skin on my hands, arms, legs, feet and neck. I also have hypothyroidism. There is a Sclero specialist, Dr. Richard Silver, at MUSC (Medical University of South Carolina) in Charleston that I see. He may be of some help to you as well.
I may have Scleroderma, but Scleroderma doesn't have me!

#10 janey


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Posted 21 May 2008 - 06:46 PM

I'd like to join the others in welcoming you to the forums. I'm sorry you've joined because of all of the physical problems are you are dealing with and are in search for answers. You have received some good advice and information, so I'll add some links that you might take a look at. (Just click on the highlighted words) as additional information.

To help with your question about rituxan, we have a small section on rituxan that cite a few studies showing it has been effective for some autoimmune diseases but not specifically, scleroderma.

Here is a list of the common symptoms, organs, etc. that are normally involved with systemic scleroderma.

On our antibodies page you find some very informative links that explain the types of antibodies that can be found with scleroderma and other rheumatic diseases. Check the links in the overview section. Many studies talk about false negatives and false positives, which means no bloodwork is 100% sure.

Only from my personal experience and reading the experiences of others it does appear that if discovered early enough, damage can be stopped. I'm no doctor but from my research I've found that there is certain damage, such as scarring in the lungs, that can be stopped but not reversed. Therefore, it's good to discuss any and ALL symptoms with your doctors. The earlier a problem is discovered, the less damage that may be caused.

Please let us know how you are doing and any future findings. Don't give up until you get some answers.

Big Hugs,

Janey Willis
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International Scleroderma Network (ISN)

#11 jefa


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Posted 21 May 2008 - 10:32 PM

Hi, Marji - Welcome to the ISN Sclero Forums if I haven't welcomed you already. You have already received much advice, but it appears that nobody has addressed your question number 5 about lower esophageal ring. I am not a medical professional, but it does seem that there could be a possibility of confusion or interaction between the diagnoses. According to the articles I read, lower esophageal ring may be congenital, but usually doesn't show up until around the age of 40. In this Medline Plus article on Lower Esophageal Ring it says that in some cases damage from GERD can contribute to it. While GERD is a major symptom of scleroderma, GERD and other esophageal problems can exist outside of scleroderma. The important thing is to treat the symptoms. It is, apparently, easier to diagnose lower esophageal ring with a barium x-ray than with endoscopy. It can be treated with dilation, also used in scleroderma related narrowing of the esophagus. I hope this helps.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)