janey

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Everything posted by janey

  1. Erin, I've tried various prescription ppi's but I keep going back to prilosec. My rheumatologist wrote me a prescription for it so that I can use the cost of it toward my medical expenses since it's the only thing that works for me. I do have to take two a day which ends up running over $30/month just for heartburn medicine, but the relief is well worth it. I hope you get some relief soon. You need to take care of that heartburn so you don't end up with esophagus damage. Big Hugs,
  2. Patty and all others, I am so sorry to read that so many of you suffer from the pain caused by scleroderma. It just proves how this disease affects us in so many different ways. Pain is not one of my symptoms and I'm very thankful for that. I don't know if any of this is going to help, but I'm providing a couple of links to ISN pages on Pain Management and treating the pain of fibromyalgia. Hopefully you'll find something in these articles that might help. Best wishes to you all for finding that combination that works. Big Hugs,
  3. Beverly, I found this on the ISN Scleroderma medications page. It's the Medline Plus information on Plaquenil (Hydroxychloroquine). Plaquenil is often used in the treatment of lupus, scleroderma and Sjogren's. It restates the information that Laurie provided and a little more. Big Hugs,
  4. Michelle, Do you have an urgent care center near by? I would HIGHLY recommend going there ASAP. My mother vomited blood recently and they did an endoscopy and found a bleeding ulcer. They were able to repair it during the procedure and after a couple of days she was doing great and has been doing quite well since then. The reason why I recommend an urgent care is because they usually respond to walk ins faster than the ER. I wouldn't worry about not having a primary care at the moment. Right now, you need to see a doctor! Please go now and then let us know what you find out. I'll be thinking of you Darling. Big Hugs,
  5. What a great idea Lisa! - both with the disability tag and the automatic car starter. Definitely something I would consider if I lived in a colder climate. We have so few brutally cold days here in the SW that I stay inside on those days and send the hubby on the errands. :) I can certainly see how it's a life saver living the the northeast and always being on the run like you are. BTW - I love the girls costumes! Big Hugs, Janey
  6. Sam, I'm so sorry that you are under the weather. Make yourself a cup of tea, grab a good book, wrap those hips in a heating pad, then wrap your whole body in a blanket, and settle in on the couch or bed for a couple of days. When you feel bad like this, you need to pamper yourself otherwise it could get worse. Stay warm and I hope you feel better soon Darling. Big Hugs, Janey
  7. Jennifer, I think it's marvelous for you to work this job! Getting out of the house and around people will be some of your best medicine. You certainly have the personality that is needed for the job. People will love you and you'll love them! Right after I was started on immunosuppressants I took a part-time job at a Children's science museum. I was around kids all day long, having to reset the exhibits after hundreds of little hands had touched them and even hosted birthday parties. I kept a little bottle of antigerm stuff in my pocket and used it quite often. I was there 10 months and never got sick with a cold, virus or flu. My co-workers were always walking around sniffling and calling in sick, but not me. Kept my hands washed and germ free. So when you shake a hand, give it a wash. Have fun! You'll love it. Big Hugs, Janey
  8. Brenda, Welcome to the Forum! I'm glad you have found us and are posting already. I'm sorry you are here due to health problems. Hopefully, on your next visit your doctor will actually be able to determine the cause of those problems. In reference to your questions on osteopenia. I did find some articles here at ISN that might help answer you question. This articles "Osteoporosis (OP) in Scleroderma" states It is unknown whether OP is truly increased in SSc or whether this association has been observed in some studies as a result of other confounding risk factors for OP. There are more articles you might explore in the Bone Readsorption section. UCTD is undifferential connective tissue disease and is when a person has symptoms of various connective tissue diseases without meeting the full criteria for any one of them. MCTD (as Patty mentioned) is mixed connective tissue disease and is when a person has two or more connective tissue diseases. I have MCTD with diffuse sclero and polymyositis. This is sometimes referred to as overlap diseases. The provided links might be able to answer your other questions as to how they diagnosis it. I was diagnosis through a couple of bloodtests (ana and CPK) but mostly symptoms. Please let us know how your doctor's appointment goes on the 9th and please, if you have more questions or just need a virtual hug - we're here for you. Big Hugs,
  9. Sweet, I just see a rheumatologist who has had several (about 50) scleroderma patients during his 30 year career. However, based on a couple of situations over the past 3 years I have discovered that I might know more about this disease than he does. when I got complete heart block, I said that the scleroderma caused it because it can cause conductive problems with the heart. He said "no it can't", then 2 weeks later came back with the comment "Now that the sclero has caused heart problems..." So I guess he went and looked it up. Today I saw my pulmonary doctor and she recommended that I go and see the scleroderma specialists at the Mayo Clinic in Scotsdale. She said if for no other reason than to get a second opinion that my doctors in Albuquerque are treating my MCTD properly. I thought it was a great suggestion and am going to look in to it. Bottom line - you need to be seeing someone that has experience treating scleroderma patients, otherwise, they're just shooting from the hip. Big Hugs, Janey
  10. Welcome CityMom! I'm sorry to read about your daughter's diagnosis of scleroderma and the joint pain that she is having to deal with. Since she has been recently diagnosed, I would recommend that she see a scleroderma specialist. Rheumatologist are great for on-going treatment, but there are not a whole lot of them out there that know a lot about scleroderma so for many, it's a guessing game. Here on ISN we have a page on scleroderma specialist worldwide. Hopefully you can find one in your area. It's really important that she see someone that has experience with treating scleroderma and not someone that hasn't seen it much. Please keep us informed as to your daughter's health and appointments. If you have any questions or just need a hug, you're in the right place. Big Hugs,
  11. Pauline, No you are not going nuts, but the itching sure can drive you nuts sometimes. Heidi provided a great link with lots of ideas. I hope you find something there that helps. Like Beanpole, I swim in the lotion with the oatmeal extract. It's helped me quite a bit. I also found in the ISN section under Itching that some doctors prescribe the drug Atarax (generic name: Hydroxyzine Hydrochloride). This is what my hubby took when he had a short bout of Xerosis. It worked for him. Good luck Darling. I hope you find something that helps. Big Hugs,
  12. Mary, First of all - Congratulations on your 42nd wedding anniversary!!!! That's a lot of years and I know they've been good ones from all your postings I've read. Sorry to hear about the fatigue. Of all our symptoms, that has got to be the worse because it's there 24/7 and I think the harder you fight it, the worse it gets. Have they changed any of your meds recently? I was doing great, then about a month ago they changed one of my meds and the fatigue hit me like a rock. I was down for the count. I only stayed on that med for 3 weeks and within 24 hours after stopping it, the fatigue lifted. So just a thought. I hope the doctor can address the fatigue issue and ease your back pain. Also, please get the SOB looked into as well. That can be caused by so many different things, and needs to be addressed. Please let us know how you are doing. Big Hugs,
  13. SDNYC, I'm so sorry to read about your dental problems. With our small mouth, any dental problems are exagerated. I did find a couple of things on ISN that might help you. We have a section on Denture Problems that you might read. In one of the PubMed cases it briefly discusses a Sectional mandibular and maxillary trays and a collapsed mandibular denture were fabricated for the total edentulous patient. You might copy this one out and take it into your dentist to have him do a little research for you. Good luck! Please let us know how you are doing and how this problem gets approached for you and solved. I'm sure you are not alone on this one and many more of us may face this challenge in the future. Big Hugs,
  14. UGH!!!! Unbelieveable Vee! I can't believe your doctors have two completely different opinions on this. How frustrating!!!! Well, you know me - I can't answer a question without a link or two so here's our section on diagnosing RA and diagnosing fibromyalgia. I hope these help. It looks like now that they have it narrowed down to one or the other, they should be able to run the right tests to determine which one it is. Keep after them girl. It's two completely different treatments, so you do want to make sure you are getting the right treatment. Thanks for keeping us informed. Hopefully next time, you'll have an answer. Big Hugs,
  15. Heddy, Ditto - You need to go see a doctor and ask for an EKG. When you have irregular heartbeats, the EKG will identify it and actually identify the type and extent. We do have a section on scleroderma cardiac involvement if you want to do some reading. Only about 15% of scleroderma patients get cardiac involvement, but it is certainly something that needs to be recognized and dealt with ASAP before it goes too far. I couldn't get any doctors to listen to my symptoms and by the time I insisted on an EKG, I was in complete heart block and ended up with a pacemaker the next day. Of course, that's completely different symptoms than yours in that my heart rate was a steady 35 bpm. I now have atrial fibrillations which is the fast heart rate and the pounding, but it's being well controlled with medication and my pacemaker so the old ticker is working just fine. I get an EKG every 4 months just to make sure. You may able to walk into the cardiology department and ask for an EKG. Onen at the clinic I use. Let us know what you find out. We'll be thinking of you. Big Hugs,
  16. Dear Wife, As Beanpole and Dave both mentioned, SOB definitely needs to be discussed with Birdman's doctor and the cause needs to be determined. I don't remember if he has a myositis along with his sclero, but when my polymyositis was highly active in the beginning, SOB and difficulty in taking a deep breath were big symptoms. In a prone position, gravity added so much weight that I could hardly breathe. As my rheumatologist explained, this was due to the weak muscles in the chest and they couldn't assist the lungs in breathing. Once the poly was treated, these symptoms went away until recently when I developed lung problems due to the sclero. Now the SOB is back. I can take a deep breath, but that usually results in a coughing fit. So please get the hubby's lungs tested. A high resolution CT and a PFT are the normal tests. At this point he needs a baseline anyway, so ask the doctor about them. Please keep us informed. Big Hugs,
  17. Mojoy, It's great to see your post and read that you are doing so well. I hope the PT helps you feel even better. Keep up those hobbies. They are so good for us aren't they? Big Hugs, Janey
  18. Whirlway, Good grief! That was some pretty stupid comments from a doctor! I certainly understand your frustration. I did find this on ISN. It might be helpful to your nephew in what's going on. It's the eleven criteria for diagnosing Lupus. This page also discusses other tests that are run in diagnosing. Hopefully this will help. Please keep us informed. Big Hugs,
  19. Eve, I'm thrilled to hear that your major organ tests all came back negative. Congratulations! That's excellent news. In reference to the hands swelling, mine use to be swollen to where I couldn't wear any of my rings. I found that 400 IU /day of Vitamin E really reduced the swelling for me. HOWEVER, since you do have hypertension, I would not recommend that because high doses of Vit E can cause hypertension. I have low blood pressure (95/60) so it hasn't affected me and my doctor is supportive if it seems to be working for me. I always get approval from my doctors on any vitamin that I take in excess of the RDA. Now that it's cold, be sure to keep your WHOLE body warm, not just your hands. I wear silk underwear and fleece hoodies around the house and that has really helped to minimize those Raynaud's episodes. I can't wear gloves because I have to type all the time, so keeping the body warm really helps. Hope you get some relief soon. Big Hugs,
  20. Sally, Sorry I'm late jumping in on your posting, but I've been out of town for a few days. The bumping into walls and always sleeping were very big symptoms during my first year. I was always tired and just wanted to sleep. I think the off balance and wobbling were due to the fatique. I slept late, took long afternoon naps then fell asleep after supper. Once I started on a treatment, both of those symptoms eventually went away. But then about a month I was put on a new immunosuppresant and the fatigue and sleepiness came back along with urinary problems. I never felt like I needed to pee and when I finally did, it took forever and it wasn't very much at all. I had to give a urine sample and it took 10 minutes, then the nurse said "Is this all you can give me?" It turned out I did have a urinary tract infection which my rheumatologist said was probably due to the new drug. Needless to say, I'm not on that drug anymore and all those ugly symptoms are gone. I hope you find out what's going on with you and that you get the proper treatment to give you some energy. Please keep us informed. Big Hugs,
  21. All my best wishes being sent your way. I know we do have several people on this forum who have been approved, so maybe some advice from them would be helpful. I do remember that as many test results as possible and notes from your doctors were helpful. Lot of good thoughts. Big Hugs,
  22. Memtos2, Welcome to the board. I'm sorry that you are here due to your diagnosis of dSSc, but as you have already discovered, it's a great place for information and support. I hope you read the information that Heidi provided on APS. The whole blood clot thing is a primary symptom of that autoimmune disease. I have dSSc but do not experience blood clots. I hope you get some answers soon. Please keep us informed on how you are doing and how your doctor appointments go. Big Hugs,
  23. Welcome Betty! I'm sorry for all the health problems you are having as well as the problems in finding a good rheumatologist to get a definitive diagnosis. Hopefully you will get one soon so you can get properly treated. Both Lupus and scleroderma are connective tissue disorders, so the doctors will probably look at your specific symptoms to help narrow it down. So be sure to write all your symptoms down and take them with you to the next appointment. Please keep us informed on how your appointment goes. Big Hugs,
  24. Congratulations Lisa! This is wonderful koodos for the great job you do for ISN and all the forum members!!!! Thanks for everything Lisa! Big Hugs,
  25. Louise, I'm glad things went well with the biopsy. Please let us know the results when you get them. It took about 2 months to get my results as well. So hang in there. Big Hugs,