AboutAmelia Yaussy Expertise I can answer questions about systemic scleroderma and live and internet resources to help you cope with this disease. I have personal experince with scleroderma, osteoarthritis, fibromyalgia, and Sjogren's Syndrome.
Experience I am a systemic scleroderma patient (12 years) and have been active in support online for nearly the same amount of time. I proposed the Usenet newsgroup alt.support.scleroderma and own the website ihavescleroderma.com.
Organizations I am a board member and volunteer for the Scleroderma Foundation, Ohio Chapter.
Publications Arthritis Today, Sept 1997, "A guide to the internet"
Education/Credentials International Webmasters Association, Web Technologies Certification
Awards and Honors Volunteer of the Year, Scleroderma Foundation, 2004; Advocacy Appreciation Award, Scleroderma Foundation, 2005
Question QUESTION: Hello,
Physicians don't seem to listen or only focus on labwork. I am not depressed, anxious, or crazy. Here is the short version. Up until 6 years ago, I was a runner.6-8 miles a day. One specific day, I noticed a nap was needed mid morning. Then a deep spueezing/burning sensation in right hip for just behind into right groin into the testicle. This pain became more prevalant along with the mid morning fatigue. Moving along, I had several nerve blocks to the ilioinguinal which helped for only a short time. Recovery between work outs became much, much longer. I began needind hours, then days to recoup. The pain spread to just behind my left shoulder blade. Strangely, these pains are helped by someone pushing a broom handle, or something round and dull hard to that area. I advise to"push like to want to push through me." Confusion is setting in with fasciculations. The eyebrow area,left hand, legs. At times when warm, my hands and feet turn purple or deep red. This happens to my right ear as well. I am at the point now of being on steroids, but that's it and I'm growing weaker by the day. All labs have been normal except for positive lyme (elisa) but negative western blot. Never a sign of inflamation until recently. ESR was 34 and CRP 2.9. Then weeks later, all normal. Multiple tests for lupus, etc. and nothing shows up in the blood. MRI of brain shows punctates,but MS doctor says not MS as these have not spread to my spine and have not gotten worse since 2005 which is when these symptoms became more agressive. I have parasthesia on the bottom of my left foot and some scoliosis in my lower spine. The confusion is becoming worse, even short walks take 2 days to recover from. It's like something is missing from me. I have tried magnesium, protein,been checked for blood sugar problems, etc. Stress of heart shows no problem. Heat is a major enemy of mine along with humidity. My mind says let's go, let's move, but my body says oh no, not so fast.I see a neuro dr. and he says go see rheumo. Rheumo says go back to neuro. Spinal has been tried twice, but I lost consciousness both times. I so want to feel good again, and I strongly feel something is being missed. Any help would be appreciated. Thanks in advance for taking the time to read this!!!
ANSWER: I'm so sorry I'm of little help other than to commiserate with you over how frustrating it is to get a diagnosis in some situations. I can only advise that you continue to pursue it, and I know that becomes very difficult. It's incredible to people who've not experienced it that we often have to work the hardest for proper diagnosis when we're feeling the worst. Enlist the help of a family member(s) or friend(s). I'm betting they are also frustrated for you and want to help.
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QUESTION: In reading this, I neglected to provide some information. My right ear, turns deep red, almost purple, even my face at times is red. Do not know if that matters or not. I do appreciate your time in looking at this. Thanks again in advance for being so kind!!!
Answer You did actually include that with your feet and hands turning red and purple. Raynaud's phenomenon, where blood vessels spasm shut and cut off circulation in response to cold or stress, can affect ears, fingers, toes, nose, and even the tongue. The color pattern classically goes white, when blood is cut off, blue, when blood trapped in the area loses oxygen, then bright red when the blood flow returns, but I often only see blue and red in my own.
Keep track of this and other symptoms in a journal or notebook, and include what you were doing and what relieved it, even the weather/temperatures you were in, etc. - anything to help your doc in her/his effort to diagnose and treat you. I know, in my case, I couldn't NOT have an answer when it affected my life so much. If the current docs don't "get" that, find one that does.
