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relicmom1

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About relicmom1

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    Colonial Heights VA
  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. What are the symptoms of Biliary Cirrhosis?

    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. Esophageal stricture

    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. Hi everyone-New here

    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. Esophageal stricture

    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. Reglan- Is it safe?

    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. domperidone update

    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. anyone on domperidone?

    Thanks Alice! I received my domperidone in the mail today, so we shall see. I will let you guys know how it goes.
  9. anyone on domperidone?

    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. anyone on domperidone?

    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. Peripheral Neuropathy and Scleroderma

    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. 3rd Different rheumatologist appt.

    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. New OTC Prevacid

    I have to take the 30mg twice daily and my insurance still pays for it. It has also become available generic!
  14. Been gone for a while

    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. teeth and sclero

    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.
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