Discussions By Condition: Autoimmune Disease

Crest VS MCTD

Posted In: Autoimmune Disease 9 Replies
  • Posted By: Anonymous
  • August 7, 2006
  • 04:52 AM

3 Dr.'s said they felt that I had MCTD with the multitude of syptoms I Have. I have had 2 diff/ ANA test and they were both positive. I went to see a Rheumatologist and he ran some tests, the tests did not show any inflamation so he says that I have Crest syndrome, but from what I have read, inflamation does not always show with MCTD. I really have none of the symptoms of Crest. Does anyone know abou these diseases????? I have also been tested for Leukemia due to a White Count that will not go down any lower than about 14,000 and goes up to about 19,000, but its not showing that I have Leukemia or any infections in my body.

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  • hi don t have alot of advice except to tell you i certainly can relate,i ve been undergoing tests for years,so far i have left ventricle heart dysfunction and arteriovenous malformation on my brain.I m in pain all the time and now at 37yrs old using a cane.I m also very frustrated and scared,now they re saying poss ms.Have you tryed searching the web or maybe a second opinion.good luck,sorry i couldn t be of any help.Sometimes its good to know your not alone in your frustration with the medical system.If you would like to chat katherine_rose27@hotmail.com
    Anonymous 42789 Replies
    • August 11, 2006
    • 06:54 PM
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  • i too have a multitude of autoimmune disordersi understand your frustrationmine are hypothyroid-hypoglycemia-fibromyalgia-CFS-epstein bar hsv1 and hsv11-add-muscle spasticity-congestive cardiomyopathy, congestive heart failure, and now my chest is so tight i feel like i cant breath most of the time even tho i have plenty of airwaycrest is part of the scleroderma family which also has elusive symptomes and diagnosis issues...i knowi am going thru all this now ans have been since 1994 needless to say i have more severe life threatening issues now because it was undiagnosis -- here is more i hope this helps you-i have had blood where ana was neg and yet its still there. and sometimes symptoms are different between you and me and we still have the same disorder. explore everything because everybody is different.i personally believe my breast implants were what made me sick. 5 months after i had implants in 1985 i got diagnosised w/hypoglycemia and hypothyroid. my hair has fallen out, heart conditions, fibromyalgia, cfs, esophyg. problems etc etc-here is one site to get you started--there are many many more. one thing i cannot find is pictures of what this looks like. but i hp this gives you a start. SclerodermaMedical Author: William C. Shiel Jr., MD, FACP, FACR What is scleroderma? How is scleroderma classified? How is scleroderma diagnosed? How is scleroderma treated? What is the outlook (prognosis) for patients with scleroderma? Scleroderma At A Glance What is scleroderma?Scleroderma is an autoimmune disease of the connective tissue. Autoimmune diseases are illnesses which occur when the body's tissues are attacked by its own immune system. Scleroderma is characterized by the formation of scar tissue (fibrosis) in the skin and organs of the body. This leads to thickness and firmness of involved areas. Scleroderma is also referred to as systemic sclerosis.The cause of scleroderma is not known. Researchers have found some evidence that genes are important factors, but the environment seems to also play a role. The result is activation of the immune system causing injury to tissues that result in injury similar to scar tissue formation. The fact that genes seem to cause a predisposition to developing scleroderma means that inheritance at least play a partial role. It is not unusual to find other autoimmune diseases in families of scleroderma patients. Some evidence for the role genes may play in leading to the development of scleroderma comes from the study of Choctaw Native Americans who are the group with the highest reported prevalence of the disease. The disease is more frequent in females than in males.How is scleroderma classified?Scleroderma can be classified in terms of the degree and location of the skin involvement. Accordingly, scleroderma has been categorized into two major groups, diffuse and limited.The diffuse form of scleroderma is involves symmetric thickening of skin of the extremities, face, trunk (chest, back, abdomen, or flanks) which can rapidly progress to hardening after an early inflammatory phase. Organ disease can occur early on and be serious. Organs affected include the esophagus, bowels, lungs with scarring (fibrosis), heart, and kidneys. High blood pressure can be a troublesome side effect.The limited form of scleroderma tends to be confined to the skin of the fingers and face. The skin changes and other features of disease tend to occur more slowly than in the diffuse form. Because a characteristic clinical pattern can occur in patients with the limited form of scleroderma, this form has taken another name which is composed of the first initials of the common components. Thus, this form is also called the CREST variant of scleroderma. This name represents the following features:C.....Calcinosis, refers to the formation of tiny deposits of calcium in the skin. This is seen as hard whitish areas in the superficial skin, commonly overlying the elbows, knees, or fingers. These firm deposits can be tender, can become infected, and can fall off spontaneously or require surgical removal. This is the least common of the CREST scleroderma variant features.R.....Raynaud's phenomenon refers to the spasm of the tiny artery vessels supplying blood to the fingers, toes, nose, tongue, or ears. These areas turns blue, white, then red after exposure to extremes of cold, or even sometimes with extremes of heat or emotional upset. For more information, please read the Raynaud's Phenomenon article.E.....Esophagus disease in scleroderma is characterized by poorly functioning muscle of the lower 2/3 of the esophagus. This can lead to an abnormally wide esophagus which allows stomach acid to backflow into the esophagus to cause heartburn, inflammation, and potentially scarring. This can eventually lead to difficulty in passing food from the mouth through the esophagus into the stomach. Symptoms of heartburn are treated aggressively in patients with scleroderma in order to prevent injury to the esophagus.S.....Sclerodactyly refers to the localized thickening and tightness of the skin of the fingers or toes. This can give them a "shiny" and slightly puffy appearance. The tightness can cause severe limitation of motion of the fingers and toes. These skin changes generally progress much slower that those of patients with the diffuse form of scleroderma.T.....Telangiectasias are tiny red areas, frequently on the face, hands and in the mouth behind the lips. These areas blanch when they are pressed upon and represent dilated capillaries.Patients can have variations of CREST, i.e. CRST, REST, ST, etc. Patients can also have "overlap" illness with features of both CREST and the diffuse form of scleroderma. Some patients have overlaps of scleroderma and other connective tissue diseases, such as rheumatoid arthritis, systemic lupus erythematosus, and polymyositis. When features of scleroderma are present along with features of polymyositis and systemic lupus erythematosus, the condition is referred to as mixed connective tissue disease (MCTD). Finally, scleroderma skin changes can be very localized. Morphea is scleroderma skin that is localized to a patchy area of the skin that becomes hardened and slightly pigmented. Sometimes morphea can cause multiple lesions in the skin. Linear scleroderma is scleroderma that is localized usually to a lower extremity, frequently presenting as a strip of hardening skin down the leg of a child. Linear scleroderma in children can stunt bone growth of the affected limb. Sometimes linear scleroderma is associated with a "satellite" area of a patch of localized scleroderma skin, such as on the abdomen.http://www.medicinenet.com/scleroderma/index.htmif you find out anything i would be interested in knowing in case it helps me too-the best to you
    Anonymous 42789 Replies
    • January 26, 2007
    • 01:32 AM
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  • This is my first visit to this forum. My mother is 84 and was diagnosed w/CREST about 15 years ago. After reading about the disease, we now realize she had the symptoms since she was very young. Looking back on my varied health issues, I now realize that I too probably have CREST, although my symptoms have not been such that I required doctor's care. I am lucky that I have a high tolerence to pain. I have been keeping a diary with two sections. One with daily symtoms as they come and go and the other lists each different type or new symptom that shows up. I have read about the wide variation of symptoms and I have most of them but not severe. Here is my question, if anyone can respond...Over the past week, I have noticed significant hair loss. I have always had very thick, dry hair. I limit the amount of washing because of the dryness. I have now seen more hair loss, quantities, especially in the front and sides. I don't believe that hair loss has been prevalent in my family. I am 58 years old. I would be interested if anyone else has seen this symptom tied to CREST.
    Becky Burnell 1 Replies
    • January 29, 2007
    • 01:59 PM
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  • Perhaps Sjogren's Disease? Do you experience dryness of the nose, mouth, eyes, and other more intimate areas? Check out the other symptoms associated with this disease as well.
    Anonymous 42789 Replies
    • February 1, 2007
    • 11:04 PM
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  • I do have symptoms of Sjogrens but did not know that hair loss was typical of this.
    Anonymous 42789 Replies
    • February 3, 2007
    • 02:47 AM
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  • I am 29 and after 6 months of going through some wacky symptoms I was diagnosed with MCTD a month ago. I have scleroderma and polymyositis. I didn't test positive for any antibodies, but I have the skin hardening and blood tests showe inflammation in my muscles. It has been a hard 6 months and I can imagine what you are going through. I say stay aggressive go to another doctor, a rheumatologist, get a second opinion. Find a doctor who will listen to you and that you feel comfortable with. This is a hard disease to diagnose and treat. But with MCTD you need to have a combination of either RA, lupus, scleroderma, poly or dermamyositis.
    andreajean624 1 Replies
    • February 10, 2007
    • 03:01 AM
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  • Hi,I'm fourteen years old, and I was diagonosed with MCTD about four years ago. I was just wondering, is it that bad?? So far, I haven't seen that much change because of the disease in my life.Moderator note: e-mail address removed for protection of privacy
    Anonymous 42789 Replies Flag this Response
  • Hello to all of you MCTD's, I've enjoyed reading about your experiences. I was diagnosed with CREST,Vaasculitis, and MCTD in 1979. I was twenty-nine years old and had three children. The beginning of this illness proved to be baffling. I would have long periods of remissions and exacherbations, with each return to the disease it would be worse. I began having problems with my centeral nervous system. Now I had Depression, cold fire sensations in my hands and feet. I developed shingles across my chest and down my right arm. Don't let anyone tell you that shingles are a one-time thing; they are not. I now added a neurologist to my list of MD,s. An important fact in your treatment is to make sure that your doctors all get along and share you medical records. By the late eighties I was doing really well, however in 1993 it came back with a vengenance. Now I had to do physical therapy. I could barely get out of bed for 16 weeks. The fatigue and weakness never got any better. Then I got Chromns disease. The only organs left untouched were the lungs; heart, liver, kidneys. However I did have an aortic anuerysm at the top of my heart. By now I'm having much difficulty in walking. In fact in my flower garden I staggered as if I was intoxicated. Even now I had tried every new drug on the market plus some experimental ones. You must absolutely stay out of the sun from the time of your diagnosis. Also fluorescent lights(they emit ultra violet A/B) which aggrevate MCTD. I have a collection of wide, wide brim hats. Find a sunscreen of pf greater than 40 and contains PARSOL. Wearing PARSOL will help you immensly. Doing exactly everything your doctor tells you to (the RHeumatologist) do will help you have an extended life span. When I was diagnosed my life span was 5 years but I'm still here. Hoeveer in January 2007, I was diagnosed with unilateral right diagphram paralysis which cost me the use of my right lung. Also an MRI detected a large mass in my uppuer right lung lobe. I am not able to sit up very long due to the pain in my right side. I have an extremely high tolerance for pain. I have to have shots in my finger joints because they are beginning to tighten up and not open up. I still fall a lot. In fact I'm recovering from a recent fall over the lawnmower. I love gardening and it gives me the strength to reach out for the next day. Most importantly you must avoid stressors in your life. My mother dies at 62, my brother at 52 and I am now 63. Of late I have been diagniosed with COPD and pulmonary highpertension. My heart is in great shape with the exception of the CTD in the muscle there. I go back to the hospital on 11-20-2007. I do hope you can find something here you can use. Remember be vigilant with your own health and take nothing forgranted plus keep all doctos appointments.Respectively yours,Garden Girlunityinc2@yahoo.com
    Anonymous 42789 Replies
    • November 18, 2007
    • 03:05 AM
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  • 3 Dr.'s said they felt that I had MCTD with the multitude of syptoms I Have. I have had 2 diff/ ANA test and they were both positive. I went to see a Rheumatologist and he ran some tests, the tests did not show any inflamation so he says that I have Crest syndrome, but from what I have read, inflamation does not always show with MCTD. I really have none of the symptoms of Crest. Does anyone know abou these diseases????? I have also been tested for Leukemia due to a White Count that will not go down any lower than about 14,000 and goes up to about 19,000, but its not showing that I have Leukemia or any infections in my body.My daughter passed from Leukemia and unfortunately I know the levels all too well. If they did a lumbar in your back and your cells were fine, you don't have leukemia. usually you see a big drop in white and then a huge jump. 19000 is just elevated. low would be like 2k-4k, if were 35k I would be concerned. My daughter's was 283k, but that is not common. the count probably means your body is indeed fighting something. prob not that, but the lumbar would be definitive. good luck
    Anonymous 42789 Replies
    • December 6, 2007
    • 10:06 AM
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