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About ErinF

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  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 hypochondriac). I have since tested positive for the HLA-B27 gene marker, and my ANA varies--sometimes it's positive, sometimes it's not. After repeated positives for SCL-70, I finally tested negative and haven't tested positive again--not once, in almost 3 years. I was relieved--AS isn't great, but it's not as debilitating as sclero and not as frightening. I remember the early days after being told I might have sclero--I cried and cried and cried and cried. Thanks to the support of people on this board I made it through. Just recently, I switched to a rheumatologist closer to where I live, and although all my records were transferred from Madison, he wanted to run all new tests and take new x-rays. Understandable. My blood tests came back pretty good--not a whole lot of inflammation, negative ANA and negative SCL-70. Good news! But my x-rays were disappointing. My left sacroiliac joint is almost completely sclerosed and fused, and my right is starting. Okay, that's expected with AS. However, what shocked him AND ME was my chest x-ray. Lung fibrosis. Incredibly rare in AS, even rarer in someone as young as me (39) without super severe symptoms of the disease. And the fibrosis is very obvious on the x-ray. My rheumatologist was incredibly positive about the whole thing, telling me that there is a new drug called Simponi that is showing great success with arresting AS (I've been on Indomethacin, which frankly, stinks). But I can't help it...the fear about sclero is creeping back. Maybe I do have it after all? Maybe all those positive ANA and SCL-70 tests came when the disease was just starting? That's what my original general practitioner thought--she was convinced that I was in the earliest possible stages, but the expert up in Madison said Nope. I finally felt like the fear of sclero had gone away and that I no longer worried about symptoms suddenly coming on fast and strong, but with my history and now this fibrosis in my lungs, I can't help but wonder if perhaps I have it, it's just "mild." Is that even possible?
  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 thyroid peroxidase antibodies. No explanation for the change in the pattern as of right now. They're going to run all the follow up ANA stuff---check again for the SCL-70 and see if that's back. At this point we're hoping it's just the Sjogren's causing the changes in the ANA. It really stinks to be feeling so positive and thinking that everything was a fluke just to have it come back with a vengeance. For a while I wasn't having any tingling in my fingers but that's back now too, and some minor swelling in a couple of fingers that comes and goes. I was on Indomethacin for the Ankylosing Spondylitis but had a bad reaction to it so now I'm on Piroxicam, which doesn't do a thing I have to say. I see the rheumatologist again on Sept. 10th but my regular doctor is foaming at the mouth at this point--she's absolutely still convinced that I'm in the early stages of a more serious connective tissue disease (you'll remember that she wanted me on Plaquenil immediately) and thinks the rheumatologist is too cautious. I think I may go with her on this one and do the Plaquenil for a few months and see what happens. Oh, the merry-go-round is so fun, isn't it? ErinF
  3. ErinF


    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 that I wasn't considered for this years ago because it is in my family. We're just one giant cornucopia of autoimmune and inflammatory diseases on my dad's side of the family. I'm beginning to think we should stop reproducing! ErinF
  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 relieved to finally get a real, solid diagnosis so that I know what I'm dealing with. He said that I have two things that are good--I'm a woman and 36 years old. The younger you are when you're diagnosed (like childhood or teens) usually means a worse prognosis and men tend to get the worst cases. The only thing I have to be on the lookout for apparently is leaky heart valves, whatever that means. I have to get checked out by a cardiologist once a year for the rest of my life, but that doesn't seem so bad to me. Thanks everyone for such terrific support over these last two months. You are all an amazing group of people!!!! Hoping everyone is well, ErinF
  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 poor. My new doctor prescribed Lunesta, but it barely touches the insomnia. I've tried everything, and sometimes I feel like the sleeplessness is the absolute worst thing about autoimmune problems. I wake up multiple times per night and I also have absolutely horrendous night sweats. I know my spinal arthritis is much, much worse during those times when my sleep is at its worst, and like WestCoast said, I wake up feeling as if a truck hit me. My husband, who sleeps like a log wherever and whenever and wakes up feeling refreshed, just has no concept. He gets mad at me because I'm not raring to go in the morning. ErinF
  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 back and hip pain. It's such a relief to know that I'm not crazy or lazy or just massively out of shape. We're still going to keep a close eye on everything and now that I'm under the care of a rheumatologist, I feel like whatever else comes down the pike will be caught early and treated well. What a terrific way to start a Monday! ErinF
  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 for that) and as of yet no Raynaud's or anything else. He also said the ANA pattern being homogenous is "better" than having it speckled nucleolar, as that is really indicative of full-blown SSc. He contemplated giving me the diagnosis of UCTD but he said he's not even comfortable with that. The resident said if it's anything, at this point it's indicating a very mild course because I developed dry eyes over 10 years ago and he said that I should have progressed much further by now if I were going to. So basically even though I have SCL 70, whatever I have is mild right now and may stay that way (thankfully!). He also reminded me that antibodies, while helpful, cannot be used reliably because they can be all over the place and never actually mean anything. I hope he's right!!! :unsure: ErinF
  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 seems to be working fine for me. My uncle, who developed gangrene from his Raynaud's, died of a blood clot in the hospital after removal of his hands. I really believe he had undiagnosed APS. I should add, though, that as of right now I don't have sclero--I'm in an undifferentiated, wait and see pattern. ErinF
  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 soak my popcorn in butter and salt and munch away... :P Erin
  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 you want to chase doctors until one agrees with you (like you actually WANT a diagnosis), but you can't help but feel that either they think that or that maybe you really are suffering from a somatic illness. I'm glad, Jessica, that you getting some meds to slow down whatever is going on inside your body! Take care! ErinF
  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 with the joint and muscle pain and fatigue. She said she's "this close" to just prescribing it, but she would really like a rheumatologist on board. I think I probably will just bite the bullet and get the second opinion. No sense in taking a chance; I owe it to my daughter to make sure I'm as healthy as I can be. On average, how long does it take to get in to see a scleroderma expert? I'm imagining several months. There's another scleroderma researcher at the Medical College of Wisconsin in Milwaukee, but she's not at a large sclero center, so maybe I should just wait. My primary care physician really wants me to see a female doctor; she think they listen better to female patients. ErinF
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