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Everything posted by kaykay

  1. My GI dialated mine, it was much worse for about a week after the procedure then it has been much better. It was done in March of this year. I hear some people go in almost weekly for it but with my health plan I couldn't afford that. I also take max dose of the PPI which seems to help. hope you find some relief soon.
  2. My gastroenterologist (GI) said it's not for me or anyone whose GERD is caused by an autoimmune disease - esophageal dysmotilty. But I don't have a hiatal hernia and maybe you don't have the esophageal problems that I have. The way he explained it in my case is that my esophagus doesn't push my food down in a coordinated way so sometimes it goes up and sometimes it goes down. He said if we did the surgery it might be harder to get it down through the surgically repaired section, because they narrow it to keep food in the stomach. then food and bile can sit in the esophagus for longer times, causing more damage. If you have any form of systemic sclerosis (SSc) or any connective tissue autoimmune disease or (might have) and if the gastroenterologist isn't a specialist with those diseases, I'd get another opinion.
  3. I got a positive ANA test and a few odd symptoms, so I read all about it and braced myself, but as soon as I think I know what might be coming something else comes (sigh). I can't figure it out. I went for a 40 minute walk at noon yesterday and had a weird reaction after I got back to my desk. Like my whole insides was puffy, I was disoriented, my head felt puffy, I felt taller than I am - is that weird? Like I'm taking up more space than I really am. My right hand, which has given me some trouble in the last year, went numb and non responsive. I couldn't get it to type or roll the mouse, it took about an hour of concentrating to get it functional and it is still sluggish and painful. My left hand is a bit of the same but not as bad. I really just hid it until I went home and told Greg about it, he reminded me that sun exposure does this to me and I guess he's right but it just seems like such an odd reaction. I would expect a rash or something if you have sun exposure problems. So yes, I've felt this before, but not so dramatic as yesterday and never had my hand go 'dead' on me like that. Does anyone else have this reaction? Should I be worried? I see rheumatologist on three month cycle so my next appointment is May 5th (or thereabouts). This sounds like a head problem to me. Today I feel like I spent yesterday crying. My eyes and head are puffy feeling and I'm SO TIRED. Any idea about this?
  4. When I first was diagnosed (UCTD then) my vit D was super low - the Doctor prescribed 50,000 units weekly (was much cheaper than buying OTC) it made a WORLD of difference - take care
  5. Yeah! what a relief! Take care!
  6. HI Melanie - Hope the new team is getting the right treatment for you and you will be feeling better soon. Have you found anything to help with those swollen hands?
  7. My symptoms are some similar and some different, but I just wanted to say that plaquenil took five months to start working for me, though I almost gave up on it at three months. It is really helping now - especially joint pain and mouth and skin sores. My fingers swell up a bit and feel like a bee sting; the plaquenil hasn't affected this, I'm sorry to say. Hang in there -
  8. Have you seen this? Nail Abnormalities by Medline Plus (NIH)
  9. Oh, I'm not taking the bet - just mentioning possibilities, either way get it diagnosed is a solid idea. You're probably right about it - Ouch - he burns them off of your tongue - oh ew.
  10. I get these. They are either white, puss filled like a blister or red, blood filled. sometime both combined or one of each right next to each other. It is part of my autoimmune (AI) condition, it often is attributed to Lupus, Sjogren's, MCTD - not sure which others if any. In my case, Plaquenil has had a positive affect on reducing the occurrence and their severity - before treatment they used to last anywhere from one hour to two or more months.
  11. The best advice I got from this forum was to ask for copies of all those tests and also the doctor visits' report. It was quite enlightening. My diagnosis is like a pong game, in my file it ranges from UCTD, Lupus, Sjogren's, CREST and MCTD the latter is probably the best description for now. One doctor told me that the more varied and undefined the symptoms are the more likely it is to be a tolerable case. So though it's frustrating waiting for a diagnosis I think actually the longer the disease takes to define itself the slower it is progressing and that is a good thing. Hang in there, and good luck with the swallow test. Are you on any GERD meds?
  12. Thank you both for that. I was confiusing Silica with Silicone - I had read a lot before the surgery and thought it was all very safe, but then when you get something like this you question those kinds of things. Eos - when I had them done they never said I'd have to redo them, but I do see that recommendation now in the link that Jeannie sent. My girlfriend had them done in 1984 and never any problem either - I really don't feel like going through the trauma again, so I don't think I would do it unless I had a problem. No hardening. Take care.
  13. I have saline filled implants since 1987 - the shell is silicone plastic - should I have them removed? Any of you with experience or thoughts on this?
  14. I had a cough for six months, sounds much like yours, I went through pulmonary tests and was cleared, Seems like in my case it is related to GERD and when the doctor dilated my esophagus and doubled my proton pump inhibitor my cough all but cleared up. Now I just have the stupid through clearing and my voice is a little hoarse. Better get to the bottom of it for sure. Good luck, I will be thinking good thoughts for you.
  15. What I have is tiny spider vains on my cheeks and nose - is this related?
  16. So I got a copy of the report, it says "probable dysmotility" and that further testing, (it names the tests, a swallow test etc) would be diagnostic but not yield treatment options. So I guess that means he's pretty sure of it but maybe his opinion is not just from the endoscope. I really don't know where I stand with all of this to be honest but he doubled up my dose of proton pump inhibitor and I feel okay, I can eat, swallow, all no problem for now.
  17. I'm on the tongue thing; do you have dysphagia? Because I think the tongue has to work extra hard to push food back and it gets tired. Sometimes I just spit a mouthful out rather than deal with swallowing it.
  18. My GI dictates while still in the exam room. I love it because I can question any points in real time. It can be surprising to leave a visit then later see that the doctor saw things differently. I have Raynaud's in my record and didn't really know that, though this past period it has gotten more obvious. In this case I'm not challenging it. Maybe the GERD is a sign of 'metatasizing' - or some other innocent explanation. I'm hoping it isn't serious. Take care
  19. Hi Celia - you know when I saw him before the procedure he said we would do the swallow test later and it sounded like that is when he could tell if it were a motility issue, so I was surprised too. Like I said I was groggy, so maybe I am mistaken. He said that he could tell that my swollowing problems are caused by my autoimune disease so maybe he is judging it based on what the esphogeal muscles looked like. I will post more when I get his written report.
  20. I had an endoscopy and colonoscopy yesterday, clear of cancer and polyps. But (and I was groggy) he said I had esophageal dysmotility caused by my autoimmune condition. So, though my rheumatologist has me down for lupus, in the last write up it says "CREST suspicion" I think it could be mixed connective tissue disease (MCTD) or CREST. So my question to you CREST sufferers is do you get mouth sores and scalp sores? Because that seems like the only symptom that isn't fitting with SSc (scleroderma). Many thanks for your insight.
  21. HI - Hope you are feeling well and at peace today. I have the results of my echocardiogram back but not the PF yet. the Echo was all normal except "mild aortic valve sclerosis" - I am 49 (50 in April) My rheumatologist didn't have time to see me and so I saw his NP, whom I like a lot. She isn't concerned about this. any thoughts?
  22. that's good advise - I will do that. I have the blood tests that have been done this year but never thought to ask for the write ups. the night pain was really severe - couldn't walk - knee pain so odd. Now I have slight pain in those joints but nothing as severe, thank you for your thoughful replies. Two more weeks before I will know anything more about my condition. meanwhile hope you all are staying warm and rested. Best, Kay
  23. Hi All - I'm pretty new here, so I'll summarize my situation. Thanks in advance for sharing your experiences and advise. A year ago I went in for joint pain and the blood test came up with a positive ANA and positive dsDNA (highly specific for lupus) he diagnosed me with undifferentiated connective tissue disease (UCTD). During the spring and summer I had mouth sores, scalp sores and joint (mild) pain. then in the fall (Sept 2nd to be exact) I had a major 'flare' painful dry eyes, couldn't swallow, couldn't eat, and began coughing - though the cough not too troublesome. I got some of those things resolved including diagnosis of Sjogren's and GERD, at my last visit my rheumatologist referred me for chest x-ray, breathing test, EKG and echocardiogram - that's next week. I also developed a mad itch. And occasional very painful night joint pains (wake-you-up-in-the-night-screaming-pain) which passes in a few hours. So weird. The past few days I've had a swollen finger (right index) it seems stupid to complain about this but it's painful, can't use it - can't bend it. Then it dawned on me - is this what 'thickening' starts out like? It feels bruised and doesn't look as swollen as it feels. Second question, since my doctor is doing the heart/lung tests we're on the right path, right? He officially diagnosed me with Lupus at last visit, but it just seems more like it is headed in this direction. I've read that there isn't any effective treatment to alter the course of systemic sclerosis (SSc) so what's in a name? As long as he's treating it properly? I don't think the possible diagnosis of SSc is getting by him, I just think he's cautious, but I'm not sure. There was so much on my mind and we only have a limited time at each doctor visit - you know. Can I just ask one more question - so when your doctor summarizes the visit and send the report to your primary or your rheumatologist do you think your rheumatologist reads it? Ever? - either when it arrives or before a visit?
  24. Hi Dazzie - I can relate to that mad itching! Let me know if something works for you. Amanda - tell me, how long between the itching and the diagnosis - or the onset of other distinctly SSc symptoms was it for you? I am currently diagnosed with lupus, but seems like we can't rule out scleroderma at this point. For me the main symptoms are GI, mouth sores, joint pain, Sjogren's and recently a cough etc which I am going in for PH and other tests on 1/29. Now the itching -
  25. Glad to hear you are cancer free! and hopefully the antibiotic will work swiftly. In some sad way when it is all said and done we are all in it alone, so take care of yourself - much love
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