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About Kimberlygolden

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  1. Hi, Would anyone be willing to share your diagnoses story? Your first symptoms, how long it took to get diagnosed? If you have diffuse or limited? Thank you!
  2. Hi Grey Pilgrim, My ANA has been on a few occasions negative. They've been done by IFA ( the best method too) but as for the other two sclero antibodies, they have not been done. Do they typically run all of them? Thanks for reading.
  3. Thank you, Shelley. I truly appreciate all the time you took to respond to me. I don't have enough words for Your compassion so thank you here, goes a long way. Kim
  4. Hi Shelley, Thank you. You are 100 percent right and very compassionate in your words. I thank you for that. In the end, we have no choice but I am one of preparation. I work better and deal easier with situations when I am not surprised. Is the rapid onset diffuse that you meantioned the same as diffuse or is that an even more "faster onset" than diffuse ? Thank you again. May I ask, what form you have and how long? Would you mind sharing your story.
  5. Wow Shelley. Thank you for all that! I surely appreciate your time and thought in that post. The specialist I am seeing called it UCTD but as soon as I mentioned the constant heartburn that just started a few weeks ago, he seemed alarmed and I knew it. We spoke about this presenting more specifically as scleroderma and he explained that lupus will " almost always" present with a positive ANA whereas 10 percent of people with sclero will be negative. You hit it right on the nail with trying to explain UCTD to anyone. Family included. I no longer speak about ANY doctor appointment because as you said, even my own husband will say " oh no, not this again! Stop it! You are fine! The doctor didn't give you a diagnoses of sclero so you obviously have nothing" I just don't mention anything about my health. Funny you said what you did...... I guess it must be common. Getting back to the UCTD, the doctor and I spoke and he already feels if it does differentiate, it will be sclero and not any other CTD so with that said, it may sound nuts but I would rather know it is not diffuse as limited has a better prognosis. I don't really want to hear ( all due respect) that limited CAN be just as bad as diffuse. I do understand that as well but I have small children that need me so understand where I am coming from please. That's what brought me here- I figured everyone who has been diagnosed would have some idea as to whether my progression is likely to be diffuse or likely to be limited. I don't have any of the CREST except for Raynauds and heartburn so I wonder if it will end up being the diffuse form. I also do not get terrible Raynauds or many episodes so again, I feel it may end up being diffuse. As I understand, diffuse happens in weeks or months? Would I have seen the skin manifestations by now? Thanks so much to you both for replying. Kindly, Kim
  6. Hi Joelf, Thank you for taking time to read my post and for replying. I hear where you are coming from and believe me, I have read, a lot. I do understand that no two people are the same but I'm hoping that those with diffuse might share their experiences as to the time frame of progression as well as those with limited and that may give me some idea. I know that all my symptoms point to sclero- I just woukd like some opinions on those who've been there and officially diagnosed, do my symptoms seem to point more toward limited or diffuse (assuming I will get a diagnosis.). The timeframe and all. Would diffuse be quicker meaning Raynauds, heartburn all at once! Would I have seem some skin hardening or tightness by now being diffuse is so rapid? How rapid is fast progression when referring to diffuse. ANY info, Many thanks.
  7. Hi , Thank you for taking an interest in me. I appreciate you taking time to read. I don't have a diagnosis but I really feel I'm heading there. I'm stressed because I'm wondering if I sound more diffuse than limited. Never really understood " how fast" diffuse really manifests. Any thoughts? 2009- hashimotos 2010- muscle fatigue 2012- raynauds in one finger ( 4 episodes) at the age of 41 Joint pains comes and goes in flares. Jan 2014- raynauds in both hands ( since then till now only 7 episodes) Strange huh? May 2014- chronic hives ( lasted 6 mos) June 2014- carpel tunnel ( comes and goes) Aug 2014- esophageal spasms ( 4 episodes ) Had manometry - was told it was within normal limits. Sept 2014- hiatal hernia May 2015- present - pruritis everyday. Intense itching , feels like bugs crawling ( still have it) June 2015- finger numbness ( lasted 1 week both hands) July 2015- finger stiffness began and fingertip sensitivity. Aug 2015- heartburn began Dry eyes and mouth Fatigue throughout the past two years. I have been seeing a sclero specialist who repeats ANA by IFA every 6 months ( I've had 11 ANA tests done. Also ran separate antibodies. Scl70 Pmscl RNA polymerase 111 U1RNP Sjogens All lupus You name it!! ALL negative. C3 and C4 were low on 2 occasions but then normal when repeated. Nailfold cap testing every 6 months have remained normal. I know AT THIS time I do not have enough disgnostic criteria for a diagnoses ( it is UCTD at the moment ) BUT my question is does diffuse Scleroderma present this way? Or is this considered fast progression? Thank you.
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