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Found 5 results

  1. Hello, my mother passed away from systemic scleroderma. I wanted to ask what kind of tests I need to do for myself and what kind of doctor should I visit, is it a dermatologist? Thanks everyone in advance.
  2. Hello all, we're new here and a little lost and confused. If this is not allowed or in the wrong area, we're sorry for that. My wife has just got some tests done and got her results back from Quest and we won't see the rheumatologist for another two weeks for a diagnosis on something. So far she has:- ANA choice (R) Screen: Positive ANA Titer: 1:160 ANA Pattern: Homogeneous SCL-70: 3.7 POS DNA AB (DS) Crithodia IFA: Negative DNA (DS) Antibody: Negative Total Iron: 33 Smooth Muscle AB Titer: 1:20 Smooth Muscle AB Screen: Positive Any feedback would be so appreciated.
  3. I am new to the forum, and need advice, help, consoling. 10 years ago I was diagnosed with Fibromyalgia and chronic fatigue. Then a heart problem, tachycardia and an intoleration to exercise, I was put on an inhaler. Then I passed out and was diagnosed with MS and put on several medications to control it. Eventually, I started choking on my food, it felt stuck in my chest and I would have to vomit it up. This started happening on a regular basis and I finally went in to have my esophagus stretched. I was told that this is not common with MS. I had some scarring, GERD, and a hiatal hernia. I was put on Prilosec. About 5 months later, they had to do it again. Then I fell down a flight of stairs several times and ripped something in my shoulder and needed surgery. During recovery, I healed so fast that my PT said I have Ellers Danlos Syndrome and needed to get it checked out, except for the fact that my skin is to tight. No elasticity in my skin at all. At the doctor, we discussed the E.D.S and which one I have. In our talk, I mentioned that I was experiencing choking again, sporadically, some swelling in my hands and feet with major pain in both upon waking up, mouth ulcers all over my tongue and in the corners of my mouth making it impossible to open my mouth to eat. My hands are always dry and will get a puckered look on my fingers. He ran a bunch of blood tests. As the results started coming in, they all were good. Then he called, my CRP was elevated, my Sed Rate was up, and my SCL-70 was positive at a 7.6. So now, on top of everything else, I have this to deal with. My appointment with the Rheumatologist isn't until October, so I wait. Worried every time I start hyperventilating when I walk up some stairs, or on a walk with my family. Watching my mouth for more ulcers or when my tongue starts hurting. Stress is high as I also found out my son has a Chiari Malformation that needs surgery, at least I can focus on him for a bit. Thanks!
  4. I was scheduled for a secretion selection test yesterday by my GI doctor due to high gastric serum levels and an elevated CEA. I have never had colon cancer and my nephrologist has questioned why she is using a CEA test as it is not a diagnostic tool. My GI doctor said the test is for benign tumors than can turn malignant and since it is just an injection of the hormone into you and subsequent blood draws I agreed to the test. To make a long story short, I spoke with the both scheduling department and the doctor the day before the procedure. I showed up at the hospital in the morning. It took two tries to get the IV in. Two and a half hours later I was told the drug for the test was coming from the pharmacy, then doctor came and questioned why the test hadn't been started, returned to say the pharmacy was mixing the medicine, and then showed up and said, "You won''t believe it." I looked at her and said, "They don't have the medicine." Bingo. She was very frustrated but had to go on to her other patients who were there for tests and told them to bring me a breakfast tray. I am amazed at how calm I stayed. I am so used to things going wrong and therapy really does help! I asked to see the manager as I did not want to get billed for anything and was told she was going down to billing to make sure. They brought me a breakfast tray with a bagel, banana and coffee and I asked if I ate it would I be charged $5,000. :D I then requested to see the manger herself, got her card so I have her name and went home. In the meanwhile, I had my pulmonary tests at my scleroderma hospital 10 days ago and still haven't heard from my doctor even though they told me she would have the results in a few days. I am concerned because I desaturated on the 6 minute walk test very quickly, where usually it is in the 3-4 minute mark and I have been shorter of breath. I have an email in to the doctor. Keep in mind I live in a part of the U.S. where there are good medical centers. I can't imagine living where you don't have access to them if this is what I encounter here. Another chapter in 'How I Fell Prey To The Medical Machine And How It Killed Me." miocean
  5. You can't always go by the numbers: It is the time of the year when I go through all my testing. This primarily consists of heart and lungs, my major organs damaged by the disease besides the kidneys which have been replaced by a kidney from a generous person and is a great gift. I know enough now to be able to read reports and ask for certain numbers and when these tests started coming in the numbers were not good. I had my appointment with my scleroderma specialist today and frankly, I was scared. I told my husband, "I feel like a soldier going off to battle and I don't know how I'll come out of it". Of course, he was right there by my side through all the testing and the doctor visit. After my doctor visit today I feel so relieved!!! Yes, I have a chronic disease with major organ damage but my fears were not realized. I don't need another heart catherization or have Pulmonary Hypertension, and although I have aortic valve stenosis (hardening) it is no greater than a person my age would normally have. The report on the CT scan of my lungs is not in yet so I don't know anything about the fibrosis increasing but according to the dr. and looking at the other tests it probably hasn't. I'll keep my fingers crossed on that one. When a new symptom appears note it you have had any changes in medication: A couple of months after my transplant I was put on Prevastin for cholesterol control as the anti-rejection medications cause high cholesterol. Several months later my legs started to ache. I went to my general practitioner about it and we ruled out all the causes of achey legs except Restless Leg Syndrome. There are no tests for that. The statin did not come up. I tolerated the pain in my legs until I started Pulmonary Rehabilitation in October when an easy workout would put me in bed for hours in pain. It was incredibly depressing. I felt extremely handicapped and worried about my mobility and quality of life. I began to feel guilty that I was given a kidney when I have so many other issues and the kidney could have gone to someone else. I heard that statins can cause leg pain so on Nov. 8th I took myself off the statin and stopped rehab. Lo and behold the pain is GONE!!! So now I can go back to rehab and get myself in better shape. And my depression has lifted. I also noticed that I had some anger issues since my transplant. Prednisone, one of my meds, can cause anger but every dr. I brought it up to has said "not at the low dose (5mg/day) you are on. I KNOW I am not reacting to things in my usual way. I brought it up with my scleroderma doctor and she said even 1 mg can cause anger issues. I thanked her so much for validating me! The best news is my skin has softened from a 45 on a scale of 0-50 to.........0!!!! Thank you for traveling with me on this journey. miocean
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