Jalee85

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About Jalee85

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    Mandan, North Dakota
  1. 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
  2. I went and got an USB microscope and I got pictures; they are definately abnormal.
  3. 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 that up with that it won't give a more clear diagnosis...lol
  4. 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 plaquenil. Sad to say I'm not sure how much they were really helping anyways but that's not really the point. With the video techinque they could take photos and actually measure things and see how far along everything is. It's been nearly a year since I may have started the Raynauds and I'm glad I have no skin changes, however it makes me think with new rashes it may be dermatomyositsis vs scleroderma, but I'm not sure at all.
  5. 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 nailfold video capillaroscopy test and can tell me where I can go I'd be very appreciative!
  6. 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 wondering if anybody else has this diagnosis and if they do what do your doctors say about it and does it complicate other issues even further..? If you develop gastroparesis from scleroderma is that meaning or suggesting that there is internal involvement.. or is it considered the same as it would be to have esophageal involvement but still be considered the limited form?
  7. 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 inform me that she was resigning her position. She didn't order any labs or a urinalysis which is shocking since part of my diagnosis is Early-Onset Lupus and I had a 4+ protein last time I had one done. Luckily it is down to a 1+ ! But she didn't know this nor did I at the time I saw her. My state medicaid won't let me go out of state for care because this rheumatologist said she could handle my case and there was no need for me to go out of state even though 3 other doctors recommended it. Now she is leaving and pretty much wasted a half year of my time. I can't get in to see the new rheumatologist until the end of February. I have a very high and sometimes irregular heart rate. I've had to stop the Raynaud's meds because of swelling so if I don't have Raynaud's I would really like to know. I'm not new to all of this; I have done a lot of research but that doesn't much matter if the doctors don't even know as much as their patient does. It helps to only have to read a on few things vs all rheumatological diseases. I also am guessing whatever the coloration changes are aside from the livedo reticularis that I have had my whole life is particularly important to be taken care of since I have capillary drop outs in my nail folds and they just keep getting destroyed and I can see the blood from that on my cuticles. I have also been getting more splinter hemorrhages as well. I've had a gazillion tests and even if they aren't normal they say it's not bad. But I am 26 years old so I wonder where I will be 10 years from now. If I don't have Raynaud's the likelihood that it would be Scleroderma get much less then the other possibility is that I have Dermatomyositis which would explain most of my symptoms. Right now I am on Plaquenil and that is it for the CTD issues. I don't mean my message to sound harsh; it's not meant to be and I understand where you are coming from, I really do, and I wish sometimes I could just blindly follow the doctors orders but when the doctors in the same practice tell you the exact opposite thing it is quite disheartening.
  8. 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.
  9. 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 week though and it hasn't helped the heart rate so I don't think it was the revatio after all. If you can afford it It could be worth trying.
  10. 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 thumb digit. I am wondering if anyone else experiences this; my friend's rheumatologist said it didn't sound like Raynauds.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.