Jump to content
SCLERO.ORG
Sclero Forums

ErinF

Members
  • Content Count

    53
  • Joined

  • Last visited

About ErinF

  • Rank
    Senior Bronze Member

Recent Profile Visitors

1,072 profile views
  1. Wow, it's been a long while since I've been on the board. A few years ago, after experiencing a year of weird symptoms (a few random episodes of Raynaud's, whole body pain, and fatigue), I was given a tentative diagnosis of systemic sclero. I had high ANA, and tested positive for SCL-70, repeatedly. I was eventually referred up to a rheumatologist in Madison, WI, who declared that I did NOT have sclero, but DID have Ankylosing Spondylitis and Sjogren's Syndrome. (I also have Hashimoto's--I just love how these stupid autoimmune disease cluster together. Everyone I know thinks I'm a crazy hy
  2. Hi everyone! It's been a while since I posted and I've missed everyone! Hope you all are doing well. I've had a really busy last 2 months and have hardly had time to breath! Anyway, after getting some fabulous test results from the rheumatologist in Madison back in June, I just had another round done to see where I'm going and it's sort of back downhill. My ANA went up to 1:640 from 1:320, and my pattern has evolved from homogenous to speckled. The rheumatologist had hoped that the Synthroid (for the Hashimoto's) would lower the ANA but instead it's gone up, as has the number of the thyr
  3. AS can be diagnosed with X-rays and a blood test, although the rheumatologist told me that it's mostly a diagnosis based on clinical symptoms--low back and hip pain (like deep inside the buttock) that tends to be one sided (although it can alternate), gets worse with inactivity, person feels the need to stoop to control the pain, eye inflammation (feeling of sand being thrown in the eyes), and fatigue. The inflammation can spread to the joints of the knees and fingers as well. Sounds like your typical autoimmune disease, doesn't it? :P AS tends to run in families, and I'm surprised th
  4. Hi everyone! I went back up to Madison today for the follow up with the rheumatologist, and got the diagnosis of ankylosing spondylitis. I'm starting the drug indomethacin, 3 times per day. He said that AS is what is causing my aches and pains, fatigue, etc. (probably even the sleep problems) and that the indomethacin should kick in about a week or so after starting it. If that doesn't help, we'll petition the insurance company for coverage for something like Enbrel or Remicaid, which he said costs about $20,000 a year (or more) and so most insurances really balk at paying it. I'm reliev
  5. I too have horrible insomnia; have had it for years. I have always believed it to be related to whatever wacky autoimmune thing I have going on, but it's been very hard to convince doctors of it until the one I got in February (who finally ran all the ANA tests). I used to take Ambien, until one morning my husband asked how long it took me to get our daughter back to sleep after I gave her the ibuprofen, and I had no memory of this event at all. Scared me to death. But the ambien, while putting me to sleep, didn't help me feel any better--it's like the quality of my sleep was still very po
  6. Fantastic news!!! I had my first repeat blood testing after the ones in February that came back positive. My Scl 70 and Ku were negative!!!! My thyroid peroxidase had gone up even just since February so it looks like I'll be starting Synthroid...but I'm so thrilled about the other two I could just cry. The CT scan showed inflammatory arthritis of the spine and hips so I find out on June 4th what the "treatment plan" (doc's words!) will be. I'm so relieved and also think it's so fortuitous that being told I might have SSc is what led to someone finally figuring out what's causing all my b
  7. Hi Jennifer, I had an ANA pattern of 1:320 homogenous and an SCL 70 of 2.18 (anything over 1.0 considered positive according to this test). The lab paperwork reads, "SCL 70 antibodies are specific for progressive systemic sclerosis and indicate a worse progress, including advanced forms of interstitial lung disease." I am also anti-ku positive, although only weakly. My rheumatologist says I am essentially "nothing" at this point, because I only have aches and pains, although I did have a rash and weird purple eyelid skin that is indicative of dermatomyositis (but the tests were negative
  8. I have APS (was diagnosed when undergoing fertility treatments several years ago). I was put on heparin shots. I felt great on them and never had a side effect except for the bruising on my belly. Shortly after my daughter was born my doctor gave me another med, because I was clotting really bad after the delivery. But everything turned out fine. The only symptoms of APS I've ever had is the miscarriages and I used to get awful headaches as a teenager. They disappeared for a while in my 20's and then came roaring back for a while. I'm now just on 325 mg. asprin per day and it see
  9. Jessica--I think putting pressure on your elbow puts pressure on the ulnar nerve, which can cause tingling in your pinky. I'm not a doctor or a health professional so obviously I could be wrong... Carpal tunnel generally doesn't affect your pinky. ErinF
  10. This is so interesting! My rheumatologist spent a lot of time looking at my nails when I went in for the possible SSc. My nailfold was normal and for him, this meant a lot. However, over the last 2 years I have been having problems with my fingernails themselves--very thin and splitting. I probably should have mentioned this to him. I see him again on June 4th so I think I will. Thanks for posting this!!! ErinF
  11. Hi everybody, Like Erin, I get sort of a light tingly feeling in my hands when I'm stressed. In fact, that's often how I finally acknowledge that I'm anxious about something. If it gets really bad, I take a Xanax and it disappears, so I definitely know it's an anxiety thing--which I think is really weird. My rheumatologist said it's not Raynaud's so not to worry about it. But I still think it's rather weird. For me, I'm probably tensing my shoulders and neck and it's compressing on a nerve. ErinF
  12. I also don't seem to have as much "umph" in my swallowing in the morning as I do later in the day. Also, I can't "swallow on demand" if you know what I mean. Taking pills has always been a bit of a problem. Over the years, my dentist has made sure that all my appts. are in the later afternoon so that my throat has loosened and therefore swallowing when he tells me to is a bit easier...but he's always told me that lots of people are like this so I'm not connecting it to the connective tissue disease. I would be so sad to lose my ability to eat popcorn. Like another confessor here, I soa
  13. Hi Nan, Nope, I'm not on any meds. As of right now, I'm not "bad" enough to justify them...and I'm not complaining. I'm glad I'm not terribly sick! I go back to the dentist on the 17th of May, and we're supposed to talk more about what kinds of things I can do over the counter. Right now I use a dry mouth toothpaste and rinse. ErinF
  14. I think Jessica's case shows how different rheumatologists can be. My ANA is 1:320 homogeneous and my Scl 70 is 2.18; both much higher than Jessica's but the rheumatologist I saw said no meds...Jessica is put on plaquenil. My primary care physician says it's all about whether or not the doctor practices "evidence based medicine" (in terms of using meds) and to what extent he/she trusts and uses antibodies. You wind up wondering which doctor is right, and maybe sometimes you just never know and have to take a chance. I sure wish, though, there was some sense of uniformity. It's not like y
  15. Shelley--It's interesting that you said the primary care physician knows me better, because today I was feeling pretty good other than just some allergy stuff and I told her that, and therefore maybe this really isn't anything I should worry about...and she replied, "Um, yeah, and the next time you have one of your "flares" what should I say? You forget what you're like on your bad days. And my preference is not to keep prescribing Medrol packs every time it happens." And she was right. Her "gut" feeling, she says, is try Plaquenil at the lowest level for a while and see if it helps w
×
×
  • Create New...