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Everything posted by jlf

  1. jlf


    Dear Joe, I have not heard of Lunesta causing scleroderma but isn't it well documented about silica and other substances? so, who knows? Maybe for you this was the trigger. For me, and I know it without doubt it was being septic after surgery in 1988. I had a FANA in 12 of 1988 which was negative (during sepsis) - in February 1989 had my first positive FANA. So, I firmly believe in scleroderma being 'triggered'. Boy has it been a ride since. Wishing you well. JLF
  2. Marilyn, I see you are a new member and welcome you. Seems we are '2 bugs in a rug' with the Hughes Syndrome. Do you have antibodies for antiphospholipid? At first my Rhuem said he did not believe the Hematologist and made quite a production of it. I went on to think, ok - so maybe I don't have it --- denial is sooooo easy. Anyway, I went back to Rhuem who wanted to retest the hypercoag antibodies -- he called back a week later, still with a little humble pie on his face saying it was true, all my test once again came back postitive. It was decided between Rhuem & hematology the hematology would treat it. (I searched long and hard for doctors that would communicate with each other.) To make a long story short, I worry about your lack of treatment and recurrent brain injury. Have you been to a hematolgist? Please feel free to write back anytime - it's always good to know you are not alone. Unitl then, take care JLF
  3. Dear All, Hope everyone is having a good day and coping. I have previously posted having a problem with TIA's over the past 3 years. It has taken a year but my test have finally become official that I also have Antiphospholipid Antibody Syndrome (Hughes Syndrome) along with my Limited Scleroderma and Autoimmune Thyroiditis, gastroparesis. I was put on coumadin 2 weeks ago and am going weekly for INR testing. (I have Lupus anticoagulant antibody and Anticardiolipin Antibody IgA, Anticentromere Antibody, & Thyroid Peroxidase Antibodies.) Is anyone else in Scleroderma Land going through this? There are alot of neuro complications to this disease - is anyone going through them? Neuro involvment includes: dizziness, confusion, memory problems, problems with coordination. These are really bothering me and I have fallen twice in the past month. It always helps me to hear from others, so if you have info or just want to say hello, please do. Until then, JLF
  4. Hello to All, Was wondering if anyone else in scleroderma land has antiphospholipid antibody syndrome secondary to scleroderma? Antiphospholipid antibody syndrome is having blood that clots too easily causing strokes, DVT's PE's, heart attacts, etc. I have had a TIA and a small stroke in the last 3 years. My doctors could not decide which treatment to give me since I cannot take aspirin and I have been on Persantine for 3 years. Since I continue to produce Lupus Anticoagulant Antibody - I was changed to Coumadin this week. I wondered if anyone has had experience with taking coumadin and if it helped other symptoms such as memory loss and headaches. Hope everyone has a great day, JLF
  5. Dear All, It cost about $20 a month. Concerned as you are, I questioned the legal aspect of it - but did find out that with a perscription you could get it. If you go to canadadrugs.com they have a toll free number - the folks there are really helpful - I talked to them before buying. According to my gastro Reglan crosses the blood brain barrier and can cause tardive dyskenesis (sp?) which can go into just plain old phycosis, Domperidone does not cross the blood brain barrier. It is a choice every one has to make one their own but I have been please with the medication and it has helped. Have a great day, JLF
  6. Hi Barefut, I take Domperidone - I was first put on Reglan which has very bad side effects. So far, the domeridone has worked - stopped my endless nausea (I have gastroparesis) and has helped with digestion. I had to sign a release and acknowledgment that it is not FDA approved. Domperidone has been used in many countries successfully for 17 years for gastroparesis. My gastro doctor faxed the perscription to a Canadian drugs pharmacy, I pay, they send - it's been really easy and hassle free. It is cheap - your insurance won't cover it because of not being FDA approved. If I were to loose my insurance, I would get all my perscriptions from them. You can check them out at a link which I can send you by PM if you are interested. Hope this has helped, JLF
  7. Dear All, Although I post a reply very seldom - I read the post daily. I asked my Rhuem why am I exhausted - I've been tired for 20 years. His reply to me was, "It takes all your energy for the disease process". This really gave me insight - so I'm passing it along to you, hope it helps. JLF
  8. Hi Whirlway, I can't keep vitamin D, I'm currently on my 3 round of high dose Vit. D. It is taken 1 pill per week for 6 weeks. I take Ergocalifertol (sp?) 50,000u. My level goes up while I'm on it - then goes right back down. When my rheumatologist. took the first level he said I was seriously deficient. I also have gastroparesis and thyroid involvement, both of these can cause the problem. Taking the vit. D will make you feel better. Hope this helps and have a good day. JLF
  9. Patty, I was told in 2006 that I have ulnar nerve compression. My neuro doctor says it can be caused by scleroderma. Look up Guyon syndrome, it is one type of compression which is often caused by calcium deposits. I have compression in my entire left arm, I have not had an emg as yet. The neuro doctor said not to ignore it for too long as it can lead to lose of use and contractures. Hope this helps, have a good day. JLF
  10. Dear Special Mom, Maybe your daughter could ask her doctor about physical therapy techniques for her finger. My toes on one foot are contracted and I often work with them to keep them bending as well as they can. It does hurt at first but once they get limbered up a little the pain stops and they feel better. However, it is a learned technique that might take PT to assist in. Have a good day, and thank you for caring about your daughter. JLF
  11. Elehos, Many thanks - I thought I might be the only one refluxing on lemonade. Having scleroderma for 18 years I can well understand where you are going with this. I live near and work with the University of Tennessee who has a research department for connective tissue disease. In hope, I call them once in a while to find out what they are doing. In March 2007 they are beginning 'Bovine research', it is directly for patients who have long standing disease and I may persue this. With that in mind, I have otherwise opted to not further treatment with the exception of my gastroparesis - since as long as we live we have to be able to ingest and digest. Going to the doctor (7 of them) only adds to my depression, confusion, and financial demise. Scleroderma takes it's toll, whether very quickly or slowly one day at a time - it is truly a day to day battle. I appreciate all the research and information available on this site - I wish well to all who participate or just read the forum messages. So, I guess I just wanted to thank you for your message which expressed so well the long term effect of coping with this disease. I hope this will be a good day for you. JLF
  12. Hello to all, I went to the gastro yesterday - because I have gastroparesis. So far nothing has worked to relieve my nausea. His suggestion was a medication that comes from Canada, Domperidone - I wondered, if anyone in scleroderma land has tried this? His next option was botox injections during EGD targeting the pyloric mucle - I have read these work but only for about 5 months - has anyone had this? Your input is always appreciated, JLF
  13. Hello All, Let's see: How long diagnosed? 18 years Feel better on meds? NO Feel it's under control? Very out of control. This year have progressed from thyroid disease to thyroid distruction. Advanced gastropareses, Hypercoag problem with lupus anticoagulant antibody,2 TIA's. Main problem now? I feel like I've given up on the idea that I'll be ok. Too many symptoms, too much pain, too nauseated, too many doctors, just plain old too much of it all. Now that sounds like a real pity party, and I don't mean to come across like that - but I'm just sick and tired of it. I've been sick my entire adult life. I have to add, I still feel life is worth living. Main symptom at diagnosis: Here's the kicker - none. It was found quite by accident when I could not get better after surgery. My added question: Greatest concern at this time? How much longer I'll be able to work & the problems attached with going out on disablity. Good day to all, JLF
  14. Dear Patty, I would think all symptoms would eventually need addressed. My Rhuem sends me to a specialist for each one - which in itself if frustrating to say the least. It's difficult to get them all on the same page. The last Rhuem I went to (for 9 years) would not let me discuss more than 2 problems at a time. The new guy - very young is more open minded to dealing with a lot of problems on an individual basis. Through my 18 years. of scleroderma I have been on many antiinflammatories, which I'm off of because they raise blood pressure. I've been on & off of prednisone more times than I can count - the new Rhuem says not take it because it makes the skin problems worse. I also asked him about some of the other meds I see listed here such as pen D, metheltrexate - he says many doctors put their scleroderma patients on meds to see if it will help, to passify them, or just simply because it's better to try something than do nothing. For myself, I have never wanted a medication that the 'cure was worse than the cause'. I have seen the research about the cytoxin and will ask my hemeatologist about that when I go back to him. Is any of this making sense? I guess to sum it all up - if you have a problem that is giving consistent problems - address it. Just be sure all MD's know, otherwise you will have problems that arise from conflicting meds. For me, simple is best. Hope this helps, JLF
  15. Hi peanut, When I went to my neuro last week I asked him about my left hand weakness along with little finger and ring finger going numb. I would have never connected this with scleroderma. To my surprise, ulnar nerve compression is associated with scleroderma along with neuropathy. His parting words to me were not to ignore it - hmmm. Don't know about that - so the question will be - is this another symptom to cope with and watch get worse, or can it be 'fixed'? You could also read up on Guyon's syndrome which is a fixable problem. Have a great day, JLF
  16. To All If you read the ISN site - then do a WEB search for reticulate hyperpigmentation under in the picture search - that is what my areas look like. Hmmm, how interesting, I have learned something new today - to that I say to all, Thank You. Bye for now, JLF Oh, PS, for the red bumps that folks have written about - yes, I've been plagued for years with those stinging things - I combine benadryl cream with cortizone cream both available over the counter. It last forever but the bumps usually leave in about 24-48 hours.
  17. Dear All, I don't know if they are permanent, but they do ache. I have a large one on my thigh that is about 2 x 2 inches. It's been there since March 05. For some reason March this year, I turned brown all over, every inch of my body - and these darker places turned from bluish to black, that's when I really worried and had the biopsies - which of course showed the inflammatory hyperpigmentation. If anyone out there in scleroderma land has info on this - please pass it along. Good day to all, JLF
  18. Hello Gizell, Well, don't know but earlier this year I had biopsies on 2 such looking places. The results came back as post inflammatory hyperpigmentation, have never quite been sure what that meant - although they are associated with scleroderma. Mine have been there going on 2 years and I have about 10 of them on my legs. Hope you have a good day. jlf
  19. Hello, I have never posted anything about my scleroderma but have decided to give it a shot. I have came to this site literally thousands of times and read articles and research. So, what finally prompted me? This overwhelming depression of getting up and going again. No, I'm not new to scleroderma, 18 years of it - Wow, has it been that long. There are days I just don't want to do it anymore. I was diagnosed early and quite by surprise - to the point that I denied it for 8 years. I've been the round of doctor gamut many times over, finally I feel like I have a good team - all 7 of them. Which I might add even with insurance is breaking us financially. In the past 4 years my scleroderma has gotten much worse with gastroparesis, thyroid involvment, blood clotting problems (leading to 2 TIA's - mini-strokes). I have taken the Raynaud's, swallowing problems, heartburn, reflux, pain, and fatigue in stride - but just can't ignore the gastroparesis. My husband is great, 5 years ago we decided he would stay at home while I worked, I made more and could no longer do the house and work. It has been good for both of us. My husband makes me laugh. I'm so thankful for him everyday. I have a grown daughter and grandson - whom are doing well at this moment. For years I have taken care of my mom who is now 80 - she's great. Well, that's enough. I look forward to hearing from some of you. Any info on coping with the gastroparesis would be appreciated. Sincerely, jlf
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