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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 done is they expose the little vessel that goes to each finger and peel off the outer layer, so that that vessel can hopefully then expand allowing more blood flow, The pain after the surgery was tolerable with pain meds.Good Luck! I hope all goes well! Patty
  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, soon after the amputation occurred that performed a surgery called a digital sympathectomy, first to my right hand and about a year later to my left and since then have not had a single ulcer. Its a surgical procedure where they expose each small blood vessel to each finger and peel off the outer layer in order to allow the vessel to expand, therefore allowing increase in blood flow. My fingers, more so on the left hand than the right still change to blue/purple when cold but I've not had one ulcer since the sugeries, which has now been 3 years. Patty
  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 wrote down everything we spoke about in terms anyone could understand, which made it much easier to remember & to describe to other Dr.s and significant others what happened at my visit. Good Luck with your appt. Keep us posted. I hope you feel better soon. Patty
  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 being with some constipation and have taken prescription medications for chronic pain for at least 10 years., but just about 10 days ago my primary Dr. changed my pain med to a longer lasting one, which has most likely contributed to this bad of a constipation. The constipation is high up causing blockage in the upper intestines. They have been treating it with every 2 hr. soap suds enemas, mag citrate ,and gave me an injection that I dont remeber the name of but its suppose to reverse the process that pain medications cause to bowel at least temporarily. The worst part is that the ER gave me some IV pain meds that reduced the awful pain I was having but my primary Dr. would not give me any further pain meds other than my usual that are not working on the agonizing cramps till we get the bowel functioning again. Well the good news is the bowels are beginning to move, so cramping has become more tolerable, and hopefully theyll be functioning well enough for me to go home tommorow or Thursday. i have taken the powdered laxative pretty regurally in the past, & will have to go back to using it on an ongoing basis, not just when I feel im getting constipated. Nina, I know what you mean, I have had at least 3 colonoscopies in the past, and each 1, I have never been clean, due to the slow motilty. the normal bowel prep they order never even begins to work on me until greater than 24 hrs. after I begin it. But now I have a very good GI Dr. and last colonoscopy he started my bowel prep 3 days prior to colonoscopy, and that time I was sucessfully cleaned out. and results were normal colonoscopy other than the slow motility. Thanks again for your input, you all are great. I will let you know when im discharged! Patty
  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 days prior to test, cause with the prep I don't even start to go to the bathroom for 24 hrs after starting prep. Well with that, what I'm trying to get at is im normally constipated, not where the stool is just stuck in the end of bowel, where you could do an enema and clear it, my constipation is up higher,the problem being getting the stool into rectum area. Nomally it doesn't seem to bother me, but a few times ayear, it gets way backed up, to where I get bad cramps. Even then I can usually take a scoop of a powdered laxative once a day for a few days & I'll get back on routine. Well, over this past week I've been experiencing this bad high up constipation, so 4 days ago at bedtime I took 2 suppositories, cause I was out of the other stuff. Well 24 hrs. went by & no results, so this night 3 days ago I tried 3 suppositories, and again 24 hrs. later, & no results. so by now I have bought some more fiber laxative, and being that I'm into about 10 days with no bowel movement I took a double scoop of the powdered stuff and 24 hrs. later still no results. Now were at this past Friday and I took another double scoop of laxative and again by yesterday no results. By now my usually flat stomach is looking like im 3 months pregnant & is hard as a rock, plus I'm getting on/off very uncomfortable cramps, but by last night these cramps were becoming continuous, so I got a enema, and by 1a, not being able to stand the cramping anymore I did the enema. i did get small results, enough so that the cramps lessened, until today, now the cramps are back, ive taken another double dose of laxative, but besides all this I'm at wits end what to do to get this stool to move down. I know the powdered stuff usually takes a couple days to work but with the double doses I've taken I would have thought if anything I would have diarrhea by now. I'm almost to the point of going to the ER, the abdominal pain is so uncomfortable but I dont want the Er DR.s to laugh about someone coming in with constipation. Have any of you all experienced anything like this or have any sugeestions, i ll be waiting to hear from you all. I will deffinetely go to my primary or GI Dr. tommorow if no results or relief of this pain by tommorow. Patty
  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 from the CREST that required 14 hospital stays over a 2 yr. time period. Now 5 years. later most of the problems with different treatments for each are manageable, but I have never returned to any type of work, because mostly the fatigue. I do take a medication that is usually given for people with ADHD called Adderal that does help significantly but the problem is the medication effect doesn't seem to last more than 3-4 hrs. then im tired again. I do take it twice a day, but when it wears off Im drained again. There are other ADHD medications I have tried but they all only seem to last that short period. Days I dont take it, it takes forever to even get to a functionable status. I feel both physically & mentally drained. Sometimes after I get my kids off to school in the mornings I'll go back to bed and sleep til sometimes 1-2pm, but it doesn't ever feel like I get enough sleep except for those few hours. I am going to talk to my Dr. about the vitamin D that was mentioned. I take 1 vitamin D supplement a day for a Vitamin D defficiency and maybe taking a higher dose would be helpful. Its good (but not really good, as no one should be this tired) to hear that I'm not the only one that experiences such a difficult fatigue. I look forward to seeing if anyone else has had treatments that have been helpful to reduce the fatigue.
  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 this horrible drop you to your knees sudden pain across my chest where I felt like someone had a vice grip they were squeezing in my chest, the pain would come suddenly out of no where and last anywhere from like 1 -5 minutes. it would be so painful I would break out in a sweat,then I'd have this residual ache below & across the breast area. It would occur and then may occur again in the same day or not again for few days. Then my Dr. would order bloodwork & it was found that my liver enzymes were elevated, so the Dr. then did 1rst an MRI, and found that my bile duct was dilating. and because of that result my GI Dr. then did a test called an ERCP( they place a scope down throat into bile duct) and observed the dilating , so they ended up placing stints in bile duct for about 6 months then would remove them. This kind of chest pain occured on/ off for about 21/2 years & 2x I had to have the stints. This started to occur shortly after I had my gallbladder removed & I was told I was still producing gall-like stones even though I no longer had a gallbladder & they were trying to push thru the bile duct, causing it to dilate. The 3rd type of chest pain I have had occured 3 different x over 3 years., it was usually either left or right side of breast area and was felt in the front of my chest & in my back at same level, even extremely painful just to take a tiny breath. Two of the times I was hospitalized after going to the ER, and there they did a CT scan and realized I had aspiration pneumonia. This usually occured about 2 -3 weeks after an episode where I wake up out of a sound sleep choking on reflux that I appearantly aspirate into my lung. Patty
  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 disease is probably one of my worst everyday problems at this point with this disease for me and would be more than grateful if the thyroid medicine would make me less tired. I have heard that if you have an untreated hypothyroid, that it will cause fatigue, so perhaps when your new medicine becomes therapeutic it will help you. I only wish I knew a way to decrease the awful fatigue I have. I will keep my fingers crossed for you. And as far as making you skinnier, sorry I'm not needing to lose weight, but have heard that the untreated disease will affect ones weight, so I'm not sure if it will or does help in that way. Good luck, I hope it does help you all the way around. In a few weeks let us know if you've noticed what if any therapeutic affects, I would be interested to know. Its also interesting to hear you call it autoimmune hypothyroidism, as I had never heard it termed that way. I assumed I had the hypothyroidism due to genetics, being my mom and sister also have it, and neither of them have any autoimmune disorder. Patty
  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 fatigue have not returned to work. Patty
  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 it down with water doesn't even work, as once it starts, my throat seems to lock right up, to a point I can't even get saliva down. While these episodes(is what I usually refer to them as) occur, anything I try to get down including saliva, comes back up. The episodes can last anywhere from a couple of minutes to over an hour. Then its as if I feel a sort of release in my throat and I can swallow again.I have had aspiration pnumonia 3 x in past. I have had many EGD's(a scope down throat) to look and see if I had a stricture, which I did not have, or if stretching the esophagus would help,which he said would not help in my case,the muscle was just weak. The EGD was also to look at the ulcers I had in my throat, I have not yet had a swallowing test. At one time the Dr. scheduled some sort of swallowing test but I chickened out and canceled when they told me I would swallow some sort of tube in part of the test &that they would take pictures of as I swallowed, because I have a real bad gag reflux & got scared I wouldnt be able to do it. I do have an appt soon with my GI Dr. and he may want to try & schedule that swallow test again. I do take two GI meds. One called Nexium for reflux & one called Reglan which I was told helps with motility, therefore would help with the swallowing, & i know this helps some, because at times when I have forgotten to take it before the meal, I've had an episode. Patty
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