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Charwim

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  1. I too have Crest Syndrome, my feet have been swollen before but mildly. This is July in Indiana; we have had super hot weather the past week and a half 90's with heat index 100. Yesterday and today my feet/ankles are huge; I've never seen them this big before, I was concerned until I started reading everyone else's post, I figure if it isn't down after 4th of July and the weekend I'll call the doctor. I've been sick since I was 27, but only recently diagnosed with CREST, but it makes perfect sense to me know with all the crazy symptoms I've had I'm now almost 46, so when they finally gave a name to my issues I did find some relief in knowing name finally after all the crazy issues I've had. I choke on liquids, I actually aspirated a French fry over a year ago, which threw me into pneumonia off and on for 2 months, that's when doctors started wondering if I didn't have more than fibromyalgia and osteoarthritis, sent me to a new RA doctor and as soon as I told her the weird symptoms I've had for 20 years, she instantly said I think you have CREST, she tested my blood SED rate high which it has always been since age of 27, same with my positive ANA, but then she went on to test my ANA pattern which was centromere. She then called said it's what we talked about, so I did feel some relief for name put to everything I've dealt with for so many years now, but then I had to research what CREST was because I'd never heard of it, once I read the symptoms I thought, oh my everything makes perfect sense now. I am a bit scared because I've been sick since the age of 27, so now that 20 years have passed and over the last 10 my body has declined a lot, so I do get a bit nervous of what's in store for me these next few years, I own a business and work 7 days a week, but I can no longer stand on my feet for more than a half hour, my fingers have turned crooked from the osteoarthritis, so grasping things hurts and I have oedema (dropsies), I'm in severe pain daily, especially in the morning when I first wake up, I've not slept in a bed for about 4-5 years because I can't or I won't be able to get up in the morning from the pain. I guess I'm here for moral support because I don't know anyone who has CREST, my family and close friends have never heard of it either. So I'm lost when it comes to this syndrome. I want to know if certain foods help, certain herbs anything natural, I need to change my habits to benefit my health, I have 2 grandbabies on the way, my first ones ever, I want to be around for many years to watch them grow up, so if anyone has advice to better my health, what helps, what to stay away from, I'd be so thankful. Sorry to ramble I'm just so excited to know I'm not alone, that there are others dealing with this. Thank you all so much for sharing your stories.
  2. I must first start at the beginning. At 27 I had trouble with my hands locking up, my legs were weak, it was about 3 months after birth of my 3rd child, had blood tests, was sent to a rheumatoid arthritis doctor in a bigger city, at which time I had a high sedimentation rate, positive ANA, so he ran more tests because he wondered about scleroderma. Whatever tests those were back in 2000 I can't remember, but I was diagnosed with fibromyalgia and arthritis at that point. Fast forward I continued to have pain etc. Over the years, around age 40 things got worse, I was diagnosed with neuropathy by a neurologist, was referred to a RA doctor diagnosed with autoimmune disorders they thought could be overlapping, fibro, osteoarthritis in which my fingers have already started to twist, some worse than others, had weird purplish nodule like things on my thighs so was referred to dermatologist by my family doctor which said those just look like small skin cysts and if they keep bugging me he could remove them which I've still not had removed. A new RA doctor took over my case just this year because my old RA doctor left the practice, the new RA doctor was awesome, she read my charts, well, what she had of them and asked me numerous questions about history. I explained about family history, my mom had been diagnosed with lupus in her mid 30s and how I'd been having issues since age 27, my aunt has some weird autoimmune disease I can't pronounce, but this doctor knew the name of it and she decided to run tests again to get a more thorough look at what others have seen with my blood tests. I always have an elevated sed rate, a positive ANA 1:640, ANA pattern is centromere, before seeing the results my doctor stated she was pretty sure it was Crest Syndrome. I was able to see my test results online, but they never let you read what the doctors notes are about the findings, only the levels and if they are abnormal, which the doctor explained that I appear to have signs of Crest the numbing of my fingers and feet get so cold that when they do warm up they turn red and swell, I have patchy dry skin on my forehead, arms, sometimes my hip or rear end, I have a tattoo that has become hard and swollen with peeling skin, I have those purplish nodules on my thighs that have dry skin in the middle, I have had issues with swallowing. Matter of fact I choked on a French fry 3 years ago which threw me into pneumonia that lasted approximately 3 months because it kept coming back, every time I catch a cold I have to be careful because I get bronchial asthma or pneumonia, I choke on foods and drinks if I'm not careful because I will aspirate. Can anyone else tell me about these lab tests, because the letter the doctor sent stated that just as we had talked in the office about the symptoms during your visit so if you notice any tightening of the skin please contact our office we will get you in sooner than your yearly check up. Can someone please explain the blood tests? Because from the way I've gathered I'm positive for Crest Syndrome, I am going to contact her to hopefully speak with her or her nurse to better understand everything. I have seen the ANA pattern of anticentromere and centromere so which is correct?
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