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Patty LaFave

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About Patty LaFave

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    Bronze Member

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    Ravena, NY
  1. I have had digital sympathectomies on both hands all finger, one hand then 8 months later other. This procedure was done after having multiple painful ulcers on multiple fingers, one ulcer on my right index resulted in an amputation of half the index finger.Both were done in 05. But I have to say since these sympathectomies I have not had one ulcer. My fingers especially on left hand still turn blue/purple when cold but no ulcers. Prior to the surgeries I tried many medications with no positive effect. I had the procedure done by an Orthopedic sugeon who specialzed in hand surgery. What is don
  2. I like Bookworm had raynauds for many years prior to developing ulcers. It was just prior to my diagnosis of Scleroderma-cREsT(2003) that I started developing ulcers. About a year after I started getting the ulcers on my fingertips, despite trying various type medications, and having a artery removed from lower leg to my ulnar area of wrist(as part of the ulnar artery had disappeared), I had to have half my Right index finger amputated. I very much agree with Bookworm too, that that one, like all the others were very very painful. I did meet an Orthopedic Dr. who specialized in hand surgery,
  3. Barefut, I'm sorry I have never taken your medicine, but I have had experiences with a few other medications where as I've been told the generic and the brand should be no different, but experienced quite significant differences in the brand vs the generic. At least with 2 different medications I've taken there had been a definite difference in my response to the med. Patty
  4. Hi all, with me I haven't noticed so much of wrinkles in my lips, but I cannot smile like I use to. The skin around my lips doesn't appear thickened, I've always seemed to have a small mouth, and what I used to always complain about having backwards lip (LOL), but over the last few years I have noticed it is much more difficult to form a smile. Well anyways I still continue to try. Patty
  5. Welcome to the forum, but so sorry to hear how bad you have felt. Who are you going to see at John Hopkins. I live in NY, have CREsT. I did go to John Hopkins and saw Dr. Wiggly. I had already been diagnosed and I like my local Rheumatologist, but was so impressed when I saw Dr. Wiggly. He spent almost 2hrs. with me, went over each aspect of CREST, areas of the illness that affected me and areas that did not, and areas that needed to be continually followed closely. He explained what needed to be done if anything for each area, and made some recommendations back to my local Rhuematologist. He
  6. Charliehorse, You may want to look back a few months or so, there are a few discussions on disablity. Someone related that scleroderma is now on a list of disaeses that are supposed to be fastracked through the paperwork.The person that responded to this post said that you have to make sure you tell the person from disabilty that interviews you that the sclero diagnosis is suppose to be fast tracked in order for them to place you application there. This person also said because sclero is fast tracked that she was approved in 5 weeks. Patty
  7. Buttons,, Good Luck with the sacral stimulation. One of the reasons I seem to stop the powdered or any other daily laxatives, is it alaways seems that my stools turn to dairrhea and I start to leak, so then I will try to slow it down & take the laxative every other day then it doesn't seem to work at all. But I often for no reason at all(ohter than maybe the backup of stool to get some leakage. At least 2 or more x a month it happens. I hate that, its so embarrasing. Patty
  8. Hi All, I have an update for you all, thank you for your input. About 2 hrs. after I wrote this post I did go to the ER via ambulance, the pain & cramps were so bad, i didn't think I could handle the 35 minute ridce in car.. After about 1 1/2 hr wait I saw the Dr. who ordered me as IV for the pain and ordered blood work and a CT Scan. With the results of the CT Scan they did admit me with a diagnosis of severe constipation. The constipation is not in the low bowel where just a few enemas will do, I already have had slow motilty for at least the past 4yrs. which contributes to always bein
  9. Hi everyone, I know this is not the most pleasant discussion, but I need some advice from anyone that's has experienced this or has any related information. I have Crest, and among many related medical problems, i have very slow motilty. The foods I eat today will take days to make it through the entire GI tract. An example of how slow my motilty is for any of you have had a colonscopy, you would know what the normal bowel prep is. It usually starts 24hrs. before test, so youll be cleaned out in time for test next day. Well with as slow as I move anything, I have to start my prep 3 da
  10. Hi all, sorry if you happen to see this reply from me twice, I started a reply then hit something that made the reply disappear, so Im not sure if it will show up twice, I hope not I also have CREST with many related medical problems & hypothyroidism, and the worst problem I have now besides chronic pain, is severe fatigue. I give all you who work with this disease such great credit. I am a Registered Nurse, but applied for Social Security disabilty in 2004, and was approved thankfully 5 months later. At the time fatigue was only a little part of the problem, I had many medical issues
  11. Janey, Thank you for the suggestion, I have written down the name of the swallowing test you mentioned, & will ask the GI Dr. about it when I see him. Im sure I could handle drinking something, but not swallowing a tube. I'll keep in touch! Take care! Patty
  12. Hi Jackie, Sorry to hear of your chest pain. i know the not knowing why can be scary and frustrating. I have in various different times in the past have had very bad chest pains, which was unrelated to any heart related problems. a couple of the episodes of chest pain I have had was found to be related to yeast infections in my throat. After being treated with Diflucan for a few days that resolved that pain. At about the time of one of the episodes with the yeast in my throat I was also found to have 2 ulcers in my throat. Another few of the times I had chest pain, in which I would get
  13. Jeanine, I wish I could give you more positive information regarding results you should expect from treatment for your hypothyroidism. what I can tell you is that my main medical diagnosis is CREST(diagnosed in 2003), but among many other medical problems I also have hypothroidism, for which I have been on levothyroxin for about 3 years, Although I usually feel warm(in normal temperaures anyhow), I'm not sure if its because of the treatment for the thyroid. I can't really say it has helped with my fatigue, because I still sleep a lot, and feel sleepy most of the time. The fatigue from this dis
  14. I am also a registered nurse since 1987. I worked about 10 years as an Orthopedic nurse, first 2 years in a hospital, then next 8 years for an Orthopedic surgeon in his office. I crossed over into home health care, first did it part-time while I was still working in the surgeons office, then left office nursing and stayed in home health care until I had to stop working due to my decline in my health from my CREST in 2004. in 2004 I applied for social security disabilty and was approved after first applying 5 months later. I am much more stable over past 2 years, but with the severe chronic fat
  15. Janey, Sorry to hear about your new diagnosis with your esophagus, but am glad to hear that a therapist will be able to help some. Your symptoms sound similiar to symptoms I've been having on occasion for about 2 1/2- 3 years. now. Was when first started my symptoms with the dysphagia would only occur 2-3x a month, but in past 6 months Ive had swallowing difficulties 1-3x a week. My swallowing difficulty occurs mostly at the dinner meal or almost anytime I try to eat to much of a bread product. like 1 or 2 slices of toast. The food feels like it gets stuck in my throat. Trying to then wash i
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