Sheryl

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Everything posted by Sheryl

  1. Gizelle, I am so glad that all went well for you. I'm sure you are happy also. Thanks for letting us know that all went well. Test and enjoy the new you. You will wonder why you waited so long to have this done. You may feel a bit of pressure for the next month at different times when you use the restroom. It is normal. Sheryl
  2. I had bi-lateral carpal tunnel. The pain was keeping me awake even though I wore the wrist guards. Pain medication and wearing the guards about 18 hours a day I was getting no relief. I chose surgery. I did my left hand first since it was the worst. I was using my elbows to get up from the floor also. Even after surgery my left hand was still bad. A small bone was out of place and It was poped back into place. I didn't have to have surgery on the right hand. It went away shortly after my left hand was fixed. I did wear the braces on both hands for about 3 months afterward if I was typing or doing anything requiring a bit of lifting or stress on my hands. All is well now. I hope yours goes away on its own like some of the others. Mine refused to just go away. Good luck. Sheryl
  3. Louise, have a great shopping trip and a wonderful time in New York. Looks like you will have some friends your age now on this website. Timo (Jess) and someone else whose mother wrote in. I couldn't find the post earlier. So maybe they will write again and you will have someone to chat with. How is college going? You haven't given us the scoop on your studies or fields of interest. Write when you return. Sheryl
  4. Peanut. Just your dialog on your symptoms makes me think of myself before going for a sleep study. The chocking or coughing or just being startled awake could be because the flap inside your throat has weaken and is closing up. Also the snoring is another sign of a sleep disorder. I have sleep apnea. It is bothersome and one of the things that I didn't realize was causing my fatigue. Now, if I could finally get in to see the results specialist I could get my machine. My referral was OK'ed but I am playing the waiting game. Just thought you might want to check into sleep apnea. Sheryl
  5. Celia, It could be anything from an old granulomatous infection. If you ever had phnemonia (sp) in the past it could be an old scar or tissue that isn't calcified. I was told I had a 3mm nodule. 6 months later I had another Cat scan. Now, I have that nodule plus a cluster of smaller nodules. So, the orginal one didn't calcify. I go in Oct. for a Cat scan with some sort of tracer or Iodine injection. This will tell the doctors more. It can be nothing. So, I am trying not to worry or let it bother me. Mine is in my left lower lobe. I was told they could all calcify and go away. I am playing the waiting game at the moment. Keep us informed. Sheryl
  6. I also get the eye twitches. Or lower lid twitches. I wasn't sure exactly what was twitching. I have had eye twitches for about 6 weeks off and on. I still at times feel like I am wiping spiderwebs off my face also. I have the lower calf charlie horse type pain. I have it daily and it is most painful when I lay down at night to go to sleep. I also get the cramps in the bottoms of my feet. Just under the toes. This pain happens to be only on my left side. From a spot in my buttocks to the calf alot. Foot occasionally. We are all real pains in the patoots I guess. All these strange things going on in our systems. At least we are having many of the same symptoms. Take care and keep moving. Sheryl
  7. Kobi, It depends what your son's initial symptoms are. The doctors will do several blood tests, exrays or Cat scans. They will try to relieve the symtoms and find out what kind/type of scleroderma your son has. How old is your son? Relief will happen depending on what is happening at the moment. Welcome to our family of Sclerodians. Hopefully, you will learn a ton of information that will be helpful in getting your son relief. Knowing the age of your child could be helpful. Others that have children in that age group will respond. Or other teens in our group could respond. I hope your son gets to come home soon. All our faith - hope - and healing comes your way. Sheryl
  8. Thanks Laura for thinking about me. I do not have my machine. I had appointments set up to get one. Then the medical supply store would call back and say they didn't get the paperwork. To make a long story short I am now waiting for an appointment with a sleep specialist. Apparently I can't get the machine without seeing this specialist. So, I had and appointment with this person and then they cancelled it because I didn't have insurance to go there with my insurance policy. Out of pocket initial fee $350.00 So I made some phone calls. I finally got a referral to see this guy and now I am waiting for another appointment. Looks like he may be booked until August. I can't believe the ridiculous run around I have had to go through. Good thing my problem isn't real severe. I can't imagine anyone waiting this long. When I get my machine I will make a big announcement. Have you gotten used to yours? Are you using it all the time? I hear so many stories about people getting them and using them a couple months and setting them aside. I hope I can get used to it. After all this trouble I had better use it. Sheryl.
  9. Barb, are you able to chew food then enjoy the flavors and spit it out in a napkin? When you are home and just family around have you ever tried that? How do you take medications? If you can't really swallow is there a port in your food sac to put let's say thyroid meds or pain pills? No WATER. Unheard of. You are so awesome girlfriend. You keep our spirits going. How is your husband and daughter? I haven't heard you mention them lately. Are the renovations complete? Too many questions for one post. You are in my thoughts. Sheryl
  10. The DNA repository family registry wants to establish a registry of scleroderma cases. They want to collect and store DNA (genetic materials in cells) and serum on scleroderma cases and available family members. They want to screen for other autoimmune diseases like lupus. You give a blood sample. They want all your medical records from your doctors office. Or at least the ones with Thyroid, Raynaud's, Scleroderma, and Lupus. The registry will contact you possibly once a year for any updates on your scleroderma. You will fill out several pages of paperwork. One is on Raynaud's. One is on type of Thyroid disease and if you have things such as Polymyalgia or Polymyositis or Dermatomyositis. Type of Scleroderma, Lupus, Osteoarthritis, Sjogrens etc. You will give a blood sample of aproximately 2 tablespoons. Your DNA is suppose to be kept confidential. You will fill out things about parents and siblings, race etc. I hope this answered your question properly. Sheryl
  11. Count me in on this one. I have had the hiatal hernia for at least 4 years that I know of. I don't know if they eventually go away or not. I'm just careful like the rest of you in that I eat smaller meals and try to stay away from fried greasy foods. Sheryl
  12. Patty, I have limited and I get the tightening in my tendons and muscles in my legs and feet. I get pains similar to charlie horses not only in my calves but across the middle of my foot and across the pad under my toes. You can't rub the pain away. It only brings on more attacks. I get severe pain for a couple days at a time in the middle of the left calf. I also have the shinny skin on my ankle areas about 7 inches high up the leg. It is still pliable but different. Sheryl
  13. Count me in. I am constantly going to a closet door or my refridgerator to get relief from the itch. I use just about anything I can find at the moment of an itch. Mine is mostly on the left side and in the middle between the shoulder blades. I miss having corners in my house. I have all round molded corners. Not helpful to use for itching. I also itch until I am red or all scratched up at times. Sheryl
  14. You might have to pay for previous test results. You shouldn't have to pay the day of a visit. Usually, they make you xerox copies to take home with you if you ask on the day he explains the results. I have forgotten to get copies in the past and they don't offer them if you don't ask. Sheryl
  15. Betty, talk to your doctor about you still taking anti acid tablets. He will prescribe something else to help you out. My gastro doctor got very upset when I told him I would awaken in the middle of the night to severe pain and take a couple of antacid tablets and when they didn't work quickly I would take a couple more. At that point I was put on the Reglan. I have lessened my doses on occasion like Mike. My reflux comes back with a vengence. I use to take 4 / 40 milligram Nexium and 4 of the Reglan daily. I now take only 3 or the Nexium and 2 of the Reglan. I always save a Reglan for just before going to bed. No nocturnal heartburn. Unless I eat Friday nite fish F R Y . I am in pain early on. So I make sure to take my meds well before eating and won't forget it before going to bed. Pamela. I don't know of any natural meds to control severe heartburn. Or the boiling acid that comes up from your stomach. If you know of something let me know. Then maybe I could eat a small lunch and bend over to pull weeds. Ha! Good luck in your decisions. Sheryl
  16. New

    Nanna, You should love our happy thriving group. Welcome! I also have sestemic sclerosis / crest. I can't believe we now have well over 15hundred members. This is awesome. Welcome to all the newest members that have joined this month. Also to our newest administrators. We have a great team of really hard workers. Ask anything you want and someone will have experienced it or have a place to send you to get the information that you need. We all get moral support and get our spirits lifted from others in the group if we have a down peroid. This group is the best. Sheryl
  17. Heidi, keep up with all of us. We will miss your labors. Hopefully, you will still be doing some research at times and keeping us informed on any new developments you come across. You have been great for all of us. I won't say fare thee well. I am sure you will be heard from often. All my love and good wishes for all things good to you and yours. Sheryl
  18. Mary-La, I hope your husband is feeling much better than he was last week. I'm glad he was able to get help and relief. Is that something that will go away on it own, given enough time? Sheryl
  19. Nan, I am glad everything turned out well. I'm cheering for your recovery of G.A.V.E. Hopefully, you will have several years of relief. Keep us informed on your proceedures. Sheryl
  20. Hello Sally, I also had Urinary Incontinence. That was fixed with a Bladder Suspension, where a mesh sac was made to hold may bladder up in a higher position. Bowel Incontinence is a bit harder to rectify. A gastroenterologist is the best person to see for the bowel problem. If you haven't had a colon check up then it will be done by him/her. If it is just caused by bacterial overgrowth then the fix is rather easy. You get your self assurance back quickly. If it is something more complicated then desperate measures may be needed. But, you will not be afraid to leave home. Your fears will go away quickly. Sheryl
  21. Birdie, are you taking anything daily to keep your system in order. I take a prescription to keep things in order after taking antibotics. I have tried several meds and this so far is the best. I have been using it for over two years. Other things stopped working after a short while or didn't work at all. Let me know if you want to know the name of it and I can send youa private message. Let me know something about the sacral nerve stimulation proceedure. Always nice to know what happens in different situations. Thanks, Sheryl
  22. Birdie, I had a problem with that. It continued to get worse. I was afraid to go to sleep at night. Every time my body relaxed I would lose control. My brain wouldn't tell my body not to have a movement. It got to the point it would happen during the day and I wouldn't know it was happening until too late. My gastroenterologist gave me a prescription for bacterial overgrowth. There are several medicines to nip the problem in the bud. Its a easy thing to fix. Bacterial overgrowth happens two to three times a year. I even bought Depends at one point. It is scary that your mind can't even control what is about to happen. This can become an everyday occurrence. I'm not sure if what you have is what I battle with but it sure sounds like it. In the back of my mind I was thinking when I get old this might be a problem not but not in my 50's. I would call your physician and let him know the seriousness of the situation. Leviquin and Xifaxan are two of the different drugs prescribed at different intervals throughout the year if you want relief and no more fears of embarrasing situations. Good luck. Let me know if you find relief. Sheryl
  23. Does anyone fix popcorn for lunch? I used to do that during the day. I didn't have to share and I could clean up the mess before anyone got home from school or work. Of course, I still make it the old fashioned way. In a kettle on the stove. Lots of butter and salt also. I keep antibotics on hand in case I have a problem. Or I just call my doctor and say I am having severe pain and need help. His response is. Did you eat corn or popcorn or peanuts this time. Usually, it is the popcorn. It is an addiction like smoking I guess. Sometimes, I just can't go without it. All other substitutions don't work for long. I end up maybe going one day then I pop my popcorn. Just thinking about it makes me want to go pop some. This topic needs to be off the screen. It is bothersome. Ha! Sheryl
  24. Jackie, Did your doctors tell you to stay away from certain types of foods. Like Pizza and Spaghetti and all Pork products. I wasn't going to have my gall bladder removed if I could control things with diet. Not a chance. I also had mine removed when I was found rolled up in a ball and rocking to try to ease the pain. I had calcified stones. They were like miniature pebbles. I still have them. About 20 in all. Good luck in your decision process. Sheryl
  25. I am finally back from Florida and I have my own computer once again. I hope everyone has a Wonderful Holiday Week full of festivities. I went to get my results of the sleep study I had in January. I found out that I do indeed have sleep apneas. I had already figured I had problems. Just needed to get the results. My oxygen levels drop alot throughout sleep. My scleroderma specialist figured out that my extream fatigue might be because of a sleep disorder. Oxygen levels are suppose to be between 94 and 100% when sleeping. Mine were between 86 and 92% Anyways, the center that did the study will see me once again and I am supose to get a C Pap machine. I really haven't figured out how to read all of my results. Did anyone else get their results from the studies they had done? I might have missed some correspondence while I was away. Sheryl