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ssakar

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About ssakar

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    Senior Bronze Member

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  • Location
    Shamrock, Texas
  1. Reglan

    Thanks, I was just curious because I am taking it. I don't have problems swallowing but I do believe I have problems moving food through all the channels. Sakar
  2. Reglan

    Is Reglan used mainly to help those with problems swallowing? Or is it also used to help with acid reflux? Thanks, Sakar
  3. I was wondering if there is a product that could flush out your system - your diegestive system?......(kinda like colon clenz) OR if this is something that would be good for us with Scleroderma? Just curious - and of course I forgot to ask my GI doctor this week. Sakar
  4. I finally got in to see a GI Specialist. Thank goodness my appt. was when it was because I had several bad nights of vomiting and was losing more weight.....now down to 100 lbs. Anyway - he switched me from Nexium to Carafate......Can anyone tell me how Carafate has worked for them? And has anyone heard of being on antibiotics daily?.......possibly forever? He tried to explain something about me possibly having an infection that just sits in my stomach due to my slow absorption rate.....or something like that. He put me on Xifaxan antibiotics for now until we get some tests ran to see what is going on. He ordered 2 tests to be ran on me next week. A CT Scan of the abdomen & pelvis (with and without oral & IV Contrast) and A SBS (Small Bowel Follow Through Series). Has anyone had these done? If so - what type of result do you get from it? This is all very new to me. I appreciate any information you might have. Thanks, Sakar
  5. Bowel Problems

    Sam, I can totally relate. I ended up going to the emergency room last night. I was so impacted that I thought I was literally gona die.....the cramps and pressure - well, I can' even explain. I ended up having 2 enema's.......YUCK!!! I hope you are feeling better now. Sakar
  6. Prednisone

    I have been taking prednisone (5 mg) for 5 months now. I haven't had any bad side effects that I can tell. And I also am not sure if or how much it is really helping me. I am on so many other med's that it is hard to tell what does what anymore.... I sure would love to sit (Indian style) on the floor one day.....let alone touch the floor. So if prednisone can help with that - I would be HAPPY!! Sakar
  7. Update On My New Pcp

    Hi Nan, I was on Zelnorm for a few weeks and it didn't seem to help.......but then that was also at a time I was very sick (before I went to the hospital). So not sure if anything would have really helped at that time. Last week I was also switched from Prilosec to Nexium........so now I'm not sure if/or which pill is doing what.....between the 'new' Nexium and the 'new' Reglan prescribed. I have had a couple of bad nights - but at least that's better than every day! Sakar
  8. I am so confused now......and everytime I call someone at SSI I get a different answer from a different representative. It is very frustrating. All I know is that I am getting my medicaid taken away from me at the end of this month. I am very very sad. The whole reason I signed up for disability is to help cover my RX's AND to pay for my 'never ending' doctor visits. (don't get me wrong - I need the money too - but my Health is overall the most important to me) Now here is my story.....For the last 5 months I have had Medicaid and SSI (450.00-Supplemental). They are discontinuing my Medicaid now because they said that my Disability of 840.00 is too much income to receive Supplemental. April 3rd will be my first payment of 840.00. I was told that you can NOT have Medicaid unlesss you have supplemental. (and of course Medicare doesn't kick in for 2 years) So I am just wondering if any of you get Medicaid and Disability at the same time? If so, PLEASE let me know because I am at a loss here and I don't know what I am going to do. Thank goodness I have my GI and rheumatologist visit set up THIS month before my Medicaid is discontinued - but that still doesn't help me in the future. Oh and I was also wondering how I should go about handling my GI appt. this Tuesday 3/20/07? It is my initial visit as a consultation - so I'm not sure if any tests will even be ran that day. I was thinking that it seems you have to be 'fasting' for some of the scope procedures anyway? I really need to get as many tests done that I can during this visit but I'm not sure how or what tests I could suggest since it is usually up to the doctor to initiate them? I really need some advice here........please help. Should I call the receptionist and try to explain all this to her? Not sure how much a receptionist can do though.... Thanks for any suggestions, Sakar
  9. Hello, I have finally got moved to my little rent house next to my parents. It sure is lonely without my friend. I found a wonderful primary care physician doctor (he is familiar with Scleroderma!!!) and he already referred me to a GI specialist (1 week) and then to my rheumatologist the following week!! He prescribed Reglan to me. I was just wondering if anyone has any experience with it? Is it something that takes a while to start working? Or should it take effect soon after taking it? I am still taking the Prilosec too. I still can't seem to gain any weight. My appetite is ok I guess - but I really don't eat as much as I should. (it's kinda hard when all I think about is the acid reflux that follows) My new doctor told me to drink 2 of those over-the-counter liquid supplement drinks a day. I think it gives me gas though - I'm still trying to figure out what causes what....it's never ending. Friday, I was shocked to receive a letter re: my SSI and Medicaid being discontinued. It states that I am only eligible for the Disability SINCE I was living with someone. So I have plans tomorrow to get that straightened out. I don't know why they changed it all of a sudden because I never once lied or led them to believe anything else other than what was going on....so they should have never given it to me in the first place if that was the case. But anyway - I am living ALONE now so I sure hope they will get this resolved. It has been weighing on my mind all weekend!!!! I NEED that money..... Medicaid only pays for 3 rx's a month too - which I just found out. And I have more than 3 rx's..... I plan on applying for food stamps now too.......I need every penny I can get!! It's a different feeling living alone now....kinda scarey. But I have faith that everything will work out for the best. It usually does. Take care, Sakar
  10. Barium Swallow Results

    I'm curious to hear your results in a few days!! I'm a little confused as to what he means by 'you having possible esophageal issues and not digestive issues'? I don't understand how the whole body works really. Sakar
  11. Dry Mouth

    I too have Sclero with lung involvement and Raynauds. I have a terrible time with dry/chapped/cracked lips and also the skin around my lips and nose.......and even my ears. I have found 2 products I really think is finally helping.....one of them is a medicated lip balm and the other is another lip balm with Aloe Vera. I get them at my local pharmacy. If you need more specific information about the products-- please email me. Sakar
  12. Not that I can even get pregnant now......but I was just wondering HOW you people do it when you are pregnant (or have kids) and have Sclero/Raynaud's? I couldn't imagine trying to take care of a baby while having this disease... I actually took care of a 2 year old for 6 days not long ago and it physically WORE ME OUT!!! My muscles/joints hurt daily so I could barely pick her up.....and my hands were flaring up with Raynaud's so it was very hard to even change her diaper - let alone try to feed her. I really admire those of you who can do it!!! Sakar
  13. Does Heat Affect Your Scleroderma?

    Yes the heat affects me. I don't know which is worse......the summer or the winter :-) The heat makes my hands really swell up and the cold makes them sorta shrivel/shrink and turn colors. Sakar
  14. Raynauds Question

    When I moved back to my hometown a few years ago, I saw an old highschool girlfriend wearing gloves at a basketball game.....She showed me her hands and they were totally white at that point. She told me she has Raynaud's - but that's all. Then just yesterday I emailed a buddy telling him of my diseases and he said he knows a girl with Raynauds AND also knows of a woman with Scleroderma too. And finally, I know of a 3rd person (through my cousin) that has Raynaud's and Scleroderma.......but I was told she only takes natural herbs etc.....no RX meds. So yes - it truly is amazing how many people have this disease..... Sakar
  15. Remission

    Now that I think back.......I remember at my last rheumatologist visit she said 'since there is no CURE for Scleroderma....our main goal is to get me into remission'. So next time I have my appointment - I will most definately ask her if she could explain a little more in detail what that entails. Sakar
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