View Full Version : New here - Should I be here?
04-23-2011, 10:28 AM
I have had Fibromyalgia for many years. I have had a high ANA for about 10 years. Now, I seem to be having skin problems so my doctor ran a new ana. Highest on the panel was Anti-centromere B Antibodies (I had an 8 with a reference Interval of 0.0-0.9)
My doctor says this probably means Scloderma but until I see somebody who specializes in this there is a possibility of Systemic Lupus. A quick look on the web seems to say Lupus and Scloderma are different.
Of course, it will be a long time until she can get me an appointment with someone who knows about this stuff, so I am researching on my own.
I will look around here and see what I can learn.
Meanwhile, I am a 68 year old female. I have a masters in Marriage, Family and Child Counseling and have worked for 30 years at IBM as a computer programmer and an instructor of computer programming.
I live on the beautiful Oregon Coast in a small town of about 3,000. Bandon is about 1/3 of the way up the coast.
Hi There! Welcome to WHL! Of course you should be here! Although the website name has Lupus in it we are here for everyone with any kind of autoimmune disease, anyone who wonders if they have an autoimmune disease and even family and friends that know someone dealing with one.
Many of our members here have overlapping diagnosis so we understand exactly what you are going through. Please make yourself at home. Fee free to look through the old posts or start new ones if you wish. I look forward to getting to know youw!
04-23-2011, 11:31 AM
Hi there and good morning, if your doctor thinks it might be scloderma, I would advise you to get promt attention. I have a very close friend with scloderm and it's very serious.
She is seening different doctors, but on regular basis see's her rheumatologist. Keep us posted, Bertie
04-23-2011, 09:43 PM
Hi and welcome to WHL.
This is a good place to research autoimmune diseases. I think that there are several here who have scleroderma overlapping with other AI diseases.
Check out Peridot_Gem. I think that she is one of them.
AI diseases like to run in packs, so your doc may find that you have more than one.
You are very welcome to come here to ask questions, vent or just chat.
04-24-2011, 06:43 AM
OK - from the answers I got here I may be beginning to understand. I have not been sure if scloderma was a subset of Lupus or it stands alone. The answers I've gotten show that it stands alone.
However, my doctor has said that I have the Lupus rash on my face so this may be one of those times when it is where do we start with not just one thing going on here. I hope I hear soon that they have at least set me up for an appointment!
Thanks for the welcome - whether I belong here or not!
04-24-2011, 07:11 AM
you always belong.
we accept all lupies and friends.
04-24-2011, 07:44 AM
Welcome to the WHL and it's lovely to have you with us and this is the place to be with what you've said about yourself, there's so many threads to learn from about Lupus and also immune Diseases.
Scleroderma is all to do with Raynauds Phenomenon, Raynauds is usually the first sign of Scleroderma Disease, it's main factor's are the ears/nose/toes and fingers and also to do with the Blood vessels and your not alone with the condition, as i have Raynauds Phenomenon myself and overlaping Diseases.
The first rash i had on my face to start it all was the butterfly rash, so i know what your going through and it will be nice getting to know you also.
~Hugs Terri~ xxx
04-24-2011, 07:54 AM
Some information to do with Raynauds and also scleroderma.
Attacks of Raynaud's phenomenon can occur several times a day, and are often brought on or worsened by exposure to cold. Warmth relieves these attacks. In severe cases, attacks can develop regardless of the temperature. Severe cases may also cause open sores or damage to the skin and bones, if the circulation is cut off for too long. Stress also can trigger the syndrome.
Typically, the fingers go through three color changes:
•First, they become very pale.
•As the blood flow is cut off, they turn a bluish color, usually in the top two sections of the second and third fingers.
•Finally, when blood flow returns, the fingers become red.
Tingling and pain can occur in the affected regions.
Click the icon to see an image of Raynaud's phenomenon.
Raynaud's is very common and occurs in 3 - 5% of the general population. It's important to note that more than 80% of patients with Raynaud's phenomenon do not have scleroderma, lupus, rheumatoid arthritis, or other serious illnesses. Raynaud's is more likely to be a symptom of scleroderma or some other connective tissue disease if it develops after age 30, if it is severe, and if it is accompanied by other symptoms (such as skin changes and arthritis).
Course of Typical Skin Changes. The primary symptoms of scleroderma occur in the skin. They often take the following course:
•Typically, pitted scars appear first on the hands. The skin begins to thicken and harden on the hands, feet, and face. The fingers may swell. This condition is called sclerodactylia or acrosclerosis. Patients with diffuse scleroderma may have swelling of the whole hand before the skin significantly thickens.
•Thickened or hardened patches may also develop on other areas of the body. (Their appearance on the trunk and near the elbows or knees tends to be a sign of a more severe condition.)
•For the first 2 or 3 years, the skin continues to thicken and feel puffy.
•This process then stops, and can even get better. The skin may soften.
•As the disease progresses further, however, the skin loses its ability to stretch, and becomes shiny as it tightens across the underlying bone, particularly in the fingers, toes, and around the mouth.
•Eventually, in severe cases, the fingers may lose the ability to move, and can be difficult to bend. The hands and feet may curl from the tightness of the skin. It may be difficult to open the mouth widely.
04-24-2011, 09:00 PM
Wow, Peridot, thank you for all of that. I think I have most of what you described in one sense or another. I can't wait to go have somebody who knows look at what is going on and have them say yea or nay!
Thank you to all for the welcome - whether I belong here or not. That feels so very good!!
04-25-2011, 03:10 AM
Your welcome to the info and i hope it's helped in some way. I was diagnosed 4yrs ago with Raynauds then the year after the rest of it plus x-rays done and because i've had 2 major strokes which as left me with Todds-paralasis /2 forms of seizures since i was 18 and i'm now 42, i also have spondalitis of the spine where i'm disfigured and i also had Deep Vein thrombosis bad besides other things, the rheumo found me an interesting lady after 25yrs of constant suffering with ailment after ailment and then i was told i was born with Lupus (i thought nice one).
My Diseases are constantley over lapping so each morning i seem to wake with one thing or another.
If you need anymore info on anything your going through just ask and i'll help in anyway i can.
04-25-2011, 04:07 AM
And welcome to WHL! And so glad to have you here. I have been diagnosed with scleroderma,
along with many more overlapping AI Diseases to go along with it, It's hard to tell where one starts an the other begains with me! Terri has already given you some great info on it, So
id like to say welcome and there is lot's of wonderful careing people here with lot's of different AI diseases and a wealth of information on lot's of AI diseases here rather it be one AI disease or several overlapping.
Have a great day! ~ Diane ~