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Lupus/lupus and crest disease


Smokaijo wrote at 2013-03-13 00:15:04
Hi Cynthia,

While you have given factual information about Lupus you should state that CREST can have cases that are mild, medium and severe, not just say mild.

A good friend of mine died tonight due to having Crest as it affected her internal organs, as well as her skin and at no time were any of her symptoms mild!

It is good to learn as much as possible about different conditions but please when giving advice check that you are not misleading people - I am sure it was not intentional and I hope Helen did her own research too.

Kind Regards


Angela wrote at 2016-10-11 08:13:11
I've had a Mylar rash and some joint pain since my early teens. My parents and I never thought twice about it. I was an Irish Step Dancer and played several sports. In my 20's when I was no longer that active, this pain continued. As well as crepitus in my knees and upper extremety joints. Again the only pain was in my wrists. At 26 I was diagnosed with bipolar depression with suicidal ideations and attempts. I found a doctor who works with me still and now all I do is fight for my life. About 13 years ago, I found a doctor to this day helps me fight for my life. In the late 1990's I became an EMT. I messed up my knee on the job. I was only told it was an ACL tear. When I got out of surgery, I was told the damage to my ACL was extremely old and was most likely a dancing injury but I did tear the medial meniscus and it was repaired. The doctor said since it was workman's comp, he couldn't do the ACL. I had to wait to get it done. In 2003 Then in 2002, I had a TIA out of nowhere. Healed completely. My incredible psychiatrist has been helping me get the best treatment. 2003 the ACL surgery and full recovery. 2003 moved to FL, was there only a couple of months and started to have seizures. That was put under control by an increase in one of my psych meds. In 2005, I was suppose to have a hysterectomy, the day before the surgeon called and said there was a problem with my blood and he said he could not do it until we know what we are dealing with. I went to the doctors office. I was stunned to see on this building Hemotology Oncology. I no longer had my family down there. I was there several times then the doctor says you have a Lupus Anticoagulant. He told me the reason the doctor refused to do the surgery was my bleeding time was more than double what it should be. He did say it can go the other way as well, blood clots. That can explain the TIA. I was relieved. Being an EMT, I knew all the warning signs of both. About 6 months later, I was in tremendous pain in my muscle and joints. I was also getting bouts of passing out. I was sent to a Cardiologist. My heart rate was so low and my blood pressure as well. The doctors couldn't understand how I was walking and standing. But when they found out my background it gave them an idea but both started to drop lower. They came to the conclusion it was my psych meds and stopped them. My internist down there was from up here in New York. She said I know it's Lupus. Go home to New York. My parents flew down to drive me home because they were afraid for me to fly without my meds so soon after 9-11. One bipolar man was just killed in Miami. My psychiatrist knew this was not in my head and she got me an internist. That internist knew very well something wasn't right. Yet it was the third rheumatologist to take their word as well as my mother's to say it was not in my head. It took 5 years to get that positive ANA. So never give up. Find a different doctor if they believe it isn't what other doctors think. Never give up on your life. I learned that the hard way. I thank God for His help, my parents and my three wonderful doctors who would not give up on finding out what was wrong with me, especially my psychiatrist. Even the two years I was in Florida, she knew I wasn't getting the help she gave me so she called about twice a month to check on me and was a therapist for me. She does both my Ned management and therapy and has been at it for about 20 years. If indeed you have lupus, does not mean you don't have Crest syndrome. Believe it or not, there is a diagnosis where a person can have more than one connective tissue disease. Lupus and scleraderma seam to run hand in hand in most cases. I'm not to sure where you live but Hospital fo Special Surgery has a great Rhuematology Division. They have world renown doctors of Rheumatological diseases. Check them out on line. If the doctor can't do it there, they don't stay there. I went from one doctor there to another. The first one lost her private practice as well as her position at HSS. It's the abbreviation for the hospital. The first doctor did tell the second it was in my head. Her loss!


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Cynthia Donlan


I am comfortable answering questions about Systemic Lupus, diagnosis , lab results. Coping strategies.. I am not as comfortable answering questions about medications and interreactions.


I am a woman who suffers with Systemic Lupus Erythematosus along with other autoimmune phenomenon. I am the Lower County Representwtive for the Lupus Foundation of PA, I am also the local support group facilitator.

Lupus Foundation OF PA

I have been on several local talk shows discussing lupus. I have had a few articles published in Lupus Foundation of PA Newsletter. My story was published in the Platelet Foundation of America book on ITP a few years ago and I am always having articles in our local papers.

I have a Bachelor of Science degree in Liberal Arts from College Misericordia and Masters of Science degree in Special Education from Bloomsburg University

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