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About jlf

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  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
  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 goin
  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 coumadi
  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 helpe
  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 l
  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 -
  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
  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 m
  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
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