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Everything posted by Jalee85

  1. Jalee85

    Jalee's Symptoms

    Picture's of Jalee's skin involvement
  2. I was diagnosed with UCTD early onset lupus with sclerodermic symptoms I was told that I have the scleroderma pattern on the nail fold as well, but I guess that doesn't mean much. I've recently looked at my own and posted pictures of it I thought it was kinda interesting anyways..lol
  3. I went and got an USB microscope and I got pictures; they are definately abnormal.
  4. I haven't posted much lately some current events would seem to be point toward lupus but I have some what of a hardening around my nailfolds. It's really odd because it is not a typical scleroderma response and this can happen in lupus to. I am seeing a dermatologist on April 4th for some biopsies and stuff and I am hoping that this appointment helps me out. I actually got a microscope to check out my own capillaries and I wanted to share with you all. I even had a sclero specialist on the east coast say that the pictures where quite impressive! That made my day aside from she followed tha
  5. Oh my goodness! Yeah it may be quite an expense to get to London let alone out of state. I know that my capillaries are abnormal. My rheumatologist who left her position for something else had looked at them with an opthamaloscope. She said they were inflamed and had drop outs in a sceroderma pattern, but she is the only one that has ever looked at them really well and now she is gone and this new rheumatologist doens't have any time to help me. She didn't even prescribe me my meds that my old rheumatologist had me on. And one of them is the Revatio for Raynauds the other was plaqueni
  6. All I want for holiday is a University or Hospital that has a Nailfold Capillaroscopy and a doctor who knows how to use it and interpret the results! If someone has had this done to them before you would make my day by letting me know who did it and where! Sadly I have lost my rheumatologist and the new one thinks there is nothing wrong with me at all she is not even seeing me again or continuing to prescribe me any medications for the connective tissue disease that I had been diagnosed with. I know I have capillary drop out and this is common in Scleroderma, so if you have had the nai
  7. Hi Jalee here! I was just diagnosed with Gastroparesis on 12/06/11. I was diagnosed via the Gastric Emptying Study.. You eat scrambled eggs with a radioactive tracer and then they use a machine that looks similar to a CT scanner to follow the eggs as it goes through your stomach.. After 4hrs if you have 10% or more food contents left in your stomach the diagnosis of gastroparesis is given (of course ruling out other things first); usually this test is only performed once the other things are ruled out! Anyways I had read that gastroparesis can occur in those with scleroderma and I was wond
  8. Shelley, I do get livedo reticularis; I also get a varying sort of colors. Sad to say but I trust my friend who is a nurse and sees a top scleroderma specialist much more than I would any of my own doctors. Unfortunately I live in a less-populated state and most of the doctors I have come across either do nothing or go the complete opposite extreme and want to do surgery. It is very important for me to know if I truly do have Raynaud's or if it's other vascular issues. I am on my third rheumatologist; the one I traveled to see over 3 1/2 hours had me come to see her just so she could infor
  9. That mottled color is called livedo reticularis and it's a vascular issue too but not usually a dangerous one unless you develop ulcers. Most don't. I've had that condition my whole life. Hopefully I posted some pics on the gallery so maybe some people can see what I am talking about. I could only post 3 pics though. My photos.
  10. I've been on Revatio aka Viagra since May 1st; I just recently stopped taking it in early September because of swelling issues that I was having; however it was the Amlodipine causing the swelling and not the Revatio. It's very expensive for Revatio and I was still having color changes so my rheumatologist said if it gets worse this winter to consider botox injections; she made it sound quite unpleasant though...lol I haven't had any ulcers, however I am off the revatio right now because I've been having a very high and irregular heart rate when I try and do anything. I haven't taken it for a
  11. Hi, I was diagnosed with Secondary Raynauds in January of 2011. It was brought to my attention by a friend of mine that my Raynauds is not the typical presentation of Raynauds. I get attacks when I am taking a bath and my feet are in the warm water. I also get attacks after my legs would get all red and there would be inflammation of my skin. It would almost seem the heat triggers my Raynauds just as much as cold does. I also get the purplish/blackish coloration on my knuckles when I am cold or in warm water, but not the tip of my fingers. I also get it on the palm of my hand nearest to the t
  12. I have a lot of deep ridges as well and now I have horizontal dents on top of that, ugh. I guess I had a urinary tract infection that went up into my kidneys! I didn't even know I was sick. I had 4+ protein in my urine. So I'm on antibiotics but whenever I get horizontal dents in my nails they don't grow in. It's something to do with my swelling of the nail bed. I know something is not right.
  13. Anybody else have Esophageal Manometry test? I'm slightly surprised that no one else has come and commented on it. Although the test was quite unpleasant so I hope not too many of you had to go through it.
  14. I can see that this was posted quite some time ago but if anyone did get their tests back could you please share with me the findings of the manometry? I just had one done yesterday morning I had some abnormal swallows that were classic scleroderma however not every swallow was. I am just trying to see if it always every swallow or if it is kind of intermittent.
  15. I was hoping I could get the test result today but the nurse didn't send the doctor the report until she finishes up the 24hr PH so I probably can't get a copy until Monday.
  16. I take the Pilocarpine. I am on Medicaid so I don't get an option if there is a generic available. But my guess is if you try a different manufacturer, like it was suggested above, you may have better luck. I had to do that with the generic Ambien.
  17. Thanks, I will check these out! It was very uncomfortable but if helps me find answers I will be happy to know for sure what is wrong. I looked online at mine and when it was abnormal it was definitely a scleroderma pattern. But the rest of the times it was normal. Weird?
  18. Has anyone else had an Esophageal Manometry? If you have, what did your results show? The nurse practitioner who did the test said that a few of my swallows showed a scleroderma type of pattern but then the others were all normal. I'm just trying to think of what would make it not allow me to swallow at some points and yet be fine with the next swallow. She thought maybe my muscle in the esophagus was getting used to the tube; however there were times when there was a normal swallow and then an abnormal one.
  19. Thank you all, for the wonderful advice! I bandgaded up my two fingers that had the tears already last night with some neosporin. Maybe that will help them heal a bit quicker. I don't recall ever having cuticle issues before so I didn't even know it was a problem until someone told me it was. The job that I was working was causing me to take large rag and dip into pretty hot water and then I would clean off tables at elementary school lunchroom. I have a sneaking suspicion as to why my hands have been drying out. I've had long cuticles since last fall but they never cracked and peeled lik
  20. Hey well I was just wondering is it common to get infection in the cuticle area? I have really long cuticles and last two days every morning when I wake a finger tears at the cuticle. I showed my primary and she said that I should trim my cuticles because they are getting infected from the tears, but the truth be told my nail fold area was already red and inflamed and that is why I am afraid to trim my cuticle. Then when I mentioned that the rheumatologist did the nailfold capillascopy and she said it was abnormal for scleroderma and she seemed to change her tune. So now I don't know what
  21. Yes the support on this group is great! I would just like to see someone face to face. It may seem weird but it would be nice to have that support I know their is at least one person with sclero in this state, but she must not use any of the support group sites. I met her husband who told me she had scleroderma as well.
  22. Hi, I was just wondering if there is anybody here on this forum that lives in North Dakota like I do. It would be nice to get to meet some people who lived nearby or even have lunches here and there for support. So I was just wondering. I live in Mandan,ND it's right next to Bismarck,ND though the capital of the state.
  23. I was on the NuvaRing which is a really low dose estrogen birth control, but I have tested positive for APS antibodies so I have gone off of that which I was on for 5 years. I am 26 years old and want to have a child yet. I am getting married in a year from now. So I was told that I should not do anything but just barrier control as you so nicely put it.
  24. If anyone happens to find any more research article on Capillary Drop Outs if you wouldn't mind sharing with me I would be really grateful!
  25. It was great to get to talk to you as well! Thank you for spending the time to hear my story!
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