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Everything posted by relicmom1

  1. Eos, don't feel bad about having to fire your rheumatologist. Been there ...done that....I went thru 3 before I found one that cared and knew about sclero. It just so happens that she is one of the sclero specialists at Johns Hopkins. With all we have to contend with, you cannot afford to have a doctor that doesn't know or just doesn't seem to care. I wish you luck with your new one.
  2. Hi enjoytheride, I have had slightly elevated liver chemicals for years on routine blood work. They thought it might be my cholesterol med, so they had me stop it for awhile. The only change in my bloodwork was my cholesterol went back up. However, a couple of years ago I entered into the DNA registry for sclero. I got a letter from them saying one of the blood tests they do showed I MAY have biliary cirrhosis. I was instructed to see my doctor. My primary care physician did an ultrasound of my liver and it was perfectly fine. Then he sent me to my gastro doctor and he did more blood work. He determined that my liver is okay. I guess what I'm trying to say is, to have it checked out. With our disease, you can never take anything for granted. Let us know how it goes.
  3. Warmheart, I don't know which PPI you were on but I'm on Prevacid 30mg twice a day. Since the over the counter brand is only 15mg, my insurance continues to pay for the 30mg. And when when it went OTC, it also became available in generic form, for which my co-pay is smaller. My doctor has to get an authorization every 6 months for it though, but that is their policy on ALL PPIs. They, in their infinite wisdom, do not think you should have to take it forever like we do.
  4. Welcome Lindsey!!! You have found a wonderful site for info and support. It is very common to be misdiagnosed. It takes some of us years to finally get a correct diagnosis. I was first told I had rheumatoid arthritis, then they said no, you have lupus and then finally the sclero diagnosis was made. It took more than one rheumatologist to get to that point. Even though he was able to correctly diagnose it, he did NOT know about the disease. He did, over time, finally order all the testing that we need to have to monitor things, as he slowly read about the disease. I finally decided that I needed someone who knows the disease, a scleroderma specialist. Here is a link on this site to a list of scleroderma specialists. I found a wonderful one at Johns Hopkins in Baltimore. They actually have a total department, including research, there. So they are up to date on all info. I know how you feel about what the future holds for you. I and I think all of us, did when we were diagnosed (and still do wonder). I began the "diagnosis trip" about 10 years ago. I have many of the same symptoms you do. Scleroderma does not progress the same in everyone, it is different for everyone. Staying positive is important!!! Whenever you feel down, remember we are all here for you!!!!
  5. I have an esophageal stricture and have had it dilated numerous times. Not only does the food go down slowly, it literally gets stuck. When it gets stuck it is extremely painful. So far, I have been able to bring it back up on my own when it has happened. Let me also say that you are a very brave person to have an endoscopy without sedation!!!! I have a terrible gag reflex and would not be able to do it without sedation. The last dilatation I had has been a little over a year ago. I am slowly beginning to have problems again and will probably have to have another one in the next few months. I also take Prevacid 30mg twice a day for the GERD. Good luck on your procedure and please let us know how it goes!
  6. Hello AngelSky :) I was on Reglan for almost 10 years without any problems. But since the problems have come to light, my gastro doctor stopped it. He has me taking domperidone now. The thing with domperidone is that it's not an approved drug in the US and comes with it's own serious risks. I have to order it from Canada. I have been on it for a month now and so far no problems. I also take Prevacid 30mg twice daily. If you do decide to take the Reglan, please let us know how it goes.
  7. Well, I have been taking the domperidone 10mg four times a day for about 2 weeks. So far, I have not had any trouble tolerating it. I do think it may be working a little better than the reglan. I know it's known to have some side effects, but ALL meds do. I have not had any though. I do have to order it from Canada, as it is not available here in the US, but I didn't have any problem getting it. My gastro doctor gave me a prescription for it and it was honored by the Candadian pharmacy. My sclero specialist at Johns Hopkins has told me she obtains it for her patients too.
  8. Thanks Alice! I received my domperidone in the mail today, so we shall see. I will let you guys know how it goes.
  9. Thanks for the replies!! I know I can always count on you guys. And no, domperidone is still not available in this country. I had to order it from Canada. My gastro doctor here wrote me a prescription for it and told me how to order it over the internet. My sclero dr at Johns Hopkins had also mentioned changing me from Reglan to the domperidone. She said she orders it from Canada for her patients. My order has been shipped, but they say it can take up to three weeks to get it. I will let you guys know how I do on it. Thanks again!
  10. I have been on generic Reglan for years for gastroparesis. Due to the recent problems that people are having with it, my gastro doctor is stopping it and putting me on domperidone 10mg four times a day. Has anyone had to switch ? Or does anyone take it now? I am wondering if it will work as well as the generic Reglan does for me. I didn't have any problems with it, but my doctor is switching all of his patients off of it. I would appreciate anyone's thoughts.
  11. I, too have CREST and peripheral neuropathy. I always assumed it was part and parcel of the CREST. It was diagnosed fairly soon after they finally diagnosed the CREST. I also have Raynaud's, Restless Leg Syndrome and have had bilateral carpal tunnel surgery. On my next visit with my rheumatologist, I will ask her opinion as to which is causing which.....
  12. I have CREST and I, too am on my third rheumatologist. I started with the symptoms, etc about 12 years ago. It took 2 rheumatologists and 5 years to get a final diagnosis. Now I go to Johns Hopkins in Baltimore to a wonderful doctor. Johns Hopkins has a scleroderma clinic and the doctors there also do research in scleroderma, so I feel they are the most up to date with info and knowledge of this disease. I would suggest anyone with this disease see a center of excellence. The "regular" rheumatologists just don't know much, if anything about sclero. I have to drive about 3 hours to get to see her, but I feel the trip is well worth it. I wish you luck and I hope you like your new specialist when you finally get to see them.
  13. I have to take the 30mg twice daily and my insurance still pays for it. It has also become available generic!
  14. Yep, I got the H1N1 vac and I didn't have any type of reaction. Strangely enough, where I live (in central Virginia, USA) I was able to get the H1N1 BEFORE I could find a seasonal flu vaccine. I have had both . Our local health department had clinics for the H1N1 and that one was free
  15. Hey Margaret, My teeth literally dissolved . They would crumble. My dentist said it was due to the excessive dry mouth and sclero. I eventually had to have them all removed and got dentures . There are mouthwashes, etc to help with the dry mouth. Personally, I don't find them to be very helpful, it wouldn't hurt to give them a try. I am sorry this has started happening . My dentist also recommended a specific brand of mouthwash. If you want, PM me and I will give you the name. Good luck.
  16. I agree with Nan. I bave both as well.
  17. Hello and welcome Bee.... You've been given LOTS of GREAT advice by others on here. Let me add just a little of my story. I began the diagnosis hunt a little over 10 years ago with the "you have this, no wait, you actually have this, etc". My first ANA was 1:1680 with a centromere pattern. This went on for a few years until I finally found the right doctor for me that was able to put 2 +2 together. When I first got the sclero diagnosis, I did the same thing everybody does, searched the internet and had the wits scared out of me. I cried for days, just knowing the end was near. Well, I found these guys and this site and they have been the greatest source of info and support. I also have managed to assemble a group of doctors that work together on me. Having a good medical team is a MUST. Now, included in my medical team is both a psychiatrist and therapist. I am on meds for the depression and anxiety. It took trying several before we found the right ones for me. Seeing a psychiatrist and therapist and admitting and accepting the fact that you need help in those areas is NOTHING to be ashamed of. Scleroderma treats each of us differently, but I REFUSE to let it take me down without a fight. I did have to retire on disability 5 years ago and went through a 2 year battle with social security (but I WON). Just remember, you are not in this proverbial boat alone. There are many of us here rowing right along with you. Any one of us will help you in any way we can. Don't be afraid to ask for help.
  18. Just wanted to add my "two cents" :) I have been through the "find the right drug" for the depression and fatigue (and I have tried quite a few). I am now on the generic wellbutrin. I have not had any bad side effects from it. It has worked quite well for me. But, as others have said, every drug works different on every person. I hope you find one that will help you sooner than later.
  19. I don't know if they are sclero related, but I get them too. They seem to happen in "spells".....
  20. Jen, I agree with the others, KEEP your appointment at Johns Hopkins. I go there and the doctors and staff are WONDERFUL. I always get a complete going over and they NEVER rush me or make me feel stupid for asking questions. I have to travel about 300 miles one way to get there, but it WELL WORTH IT to see a doctor that is well versed in this disease. As I'm sure you have learned from us, this disease can be very differrent from person to person. Good luck and keep us informed :)
  21. I am one who unfortunatley, refluxes bad in my sleep. I have had aspiration pneumonia several times because of it. I have finally got a "routine" down pat that helps prevent it. I now take my Prevacid twice a day, don't eat after 6pm, have the head of my bed elevated and have to be very careful about what I eat. I also have gastroparesis, so food stays in my stomach longer than it should, which also can aggravate or trigger the reflux.
  22. Wow!! It's been over a year since I posted this. To update, I have adjusted to the full mask...we still have our "moments" but for the most part everything is good. I do open my mouth after I fall asleep, so I do have to have a mask that covers my big mouth :blink: . My machine also has the humidifier and heater. When I first put it on, the moisture is bit uncomfortable until it heats up. Every once in a while, I must take it off in my sleep, 'cause I wake up with the mask lying on my chest. I truly feel for anyone that has sleep apnea, it is an aggravating problem, not to mention deadly.....
  23. I, too, have that run over by a mack truck feeling most days. I have CREST with minimal skin involvement and lots going on inside too. I also was diagnosed with fibromyalgia. I would see the doctor and see if this is possibly the source of your pain.
  24. I agree that you should call or see your doctor. I, too, have to have the stretching done every year (or just about). One time it didn't last but a few months and it was becaause he didn't stretch it as far as he usually does, thinking that it would be ok...well, it wasn't and I had to have it done again.
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