Dear Lynn,
Over am overcome by tears... I was diagnosed with lupus 5 years ago. 9 years ago I had a deep veinthrombosis and was diagnosed with factor 5 laden syndrome. Since then it has been progressive.
My symptoms are as follows: raw irritated tongue, sores that heal in my mouth, cold sores, nose sores, horseness, difficulty swolling at times, electric shock pain in my eyes and chest. Fibromylgia throughout my body. Which my rheumatologist put me on cymbalta - helps a little. neuropathy, stabbing pain that throws me for a loop. Pain in my joints especially fingers, and hands. Swelling in joints. Dizziness. Headaches on the side of my head...Well the list goes on - my rhematologist pretty much says it is unexplained territory and he is honest about he doesnt know what to do. I work in Physical Therapy and it seems to be getting harder all of the time to work...My strength in my hands have decreased. I had a brain MRI a year ago and it indicated either MS and/or sjogrens. Many times throughout the year I hav to go in for iron infusions, also anemia....But being on coumadin for 9 years. There has to be some coalation between all of these factors..........My cousin has lupus, my sister has raynauds phenonmon. When I read that SSB affects all of your organs, even down to the possibility of cirrohosis of he liver, lymphoma it scares me! I had a patient who had a daughter in law that died from sjogrens, she was a patient at the mayo clinic, she lost of sensation from her neck down, so she was on a feeding tub and could not hold her head up. The doctors gave he mega doses of steriods and chemo therapy. But unfortunately it was unsuccessful. She was 40. There has to be more educations and better treatments. These autoimmune seem to have some kind of connection. Thanks for listening, your SSB/SSA/lupus/factor 5 laden syndrome concerned warrior for a cure. ....sheila
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Dear Lynn,
April 24, 2010 - 7:07pmOver am overcome by tears... I was diagnosed with lupus 5 years ago. 9 years ago I had a deep veinthrombosis and was diagnosed with factor 5 laden syndrome. Since then it has been progressive.
My symptoms are as follows: raw irritated tongue, sores that heal in my mouth, cold sores, nose sores, horseness, difficulty swolling at times, electric shock pain in my eyes and chest. Fibromylgia throughout my body. Which my rheumatologist put me on cymbalta - helps a little. neuropathy, stabbing pain that throws me for a loop. Pain in my joints especially fingers, and hands. Swelling in joints. Dizziness. Headaches on the side of my head...Well the list goes on - my rhematologist pretty much says it is unexplained territory and he is honest about he doesnt know what to do. I work in Physical Therapy and it seems to be getting harder all of the time to work...My strength in my hands have decreased. I had a brain MRI a year ago and it indicated either MS and/or sjogrens. Many times throughout the year I hav to go in for iron infusions, also anemia....But being on coumadin for 9 years. There has to be some coalation between all of these factors..........My cousin has lupus, my sister has raynauds phenonmon. When I read that SSB affects all of your organs, even down to the possibility of cirrohosis of he liver, lymphoma it scares me! I had a patient who had a daughter in law that died from sjogrens, she was a patient at the mayo clinic, she lost of sensation from her neck down, so she was on a feeding tub and could not hold her head up. The doctors gave he mega doses of steriods and chemo therapy. But unfortunately it was unsuccessful. She was 40. There has to be more educations and better treatments. These autoimmune seem to have some kind of connection. Thanks for listening, your SSB/SSA/lupus/factor 5 laden syndrome concerned warrior for a cure. ....sheila
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