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Everything posted by ssakar

  1. ssakar


    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. ssakar


    Is Reglan used mainly to help those with problems swallowing? Or is it also used to help with acid reflux? Thanks, Sakar
  3. 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
  4. 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
  5. ssakar

    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. ssakar


    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. 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
  8. ssakar

    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
  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. 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
  11. I'm actually very disappointed with my doctor's office. They were supposed to call ME when the Barium Swallow tests were in so that I could get in to see a GI specialist afterwards. Well - I called around 5 (closing time) and they were heading out the door and didn't want to deal with my call. I asked if my test results were in and was told it would be with my chart if so - and the charts were already locked up for the day. URGGHHH So the receptionist said to call the hospital and they might have a copy of the lab. I WAS FUMING!!! I called the hospital and they did have a copy but said they couldn't give me the results over the phone BUT I could pick up a copy. They have had the results for several days now........I am very very upset and will be letting my doctors office hear about it first thing Monday morning - and it WON'T be PLEASANT!!!! So anyway - long story short - I picked up the results and it looks like everything is just FINE. So now I'm wondering if my doctor will still call in a referral to the GI specialist since there is nothing wrong with the Barium Swallow test. I know there is still something wrong with me and I feel I NEED more tests ran. Does anyone know how hard it is to have tests ran by a specialist if they don't have anything to go by? (besides my word with the symptoms I'm having) I don't know if ya'll remember - but this is the doctor that said he spoke with the GI Specialist and was told that he couldn't help me if it was Scleroderma related.... Well - now that the Barium test came back ok.......I'm not sure what "I" am considered. Sakar
  12. ssakar

    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
  13. ssakar

    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
  14. ssakar

    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
  15. ssakar

    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
  16. ssakar


    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
  17. ssakar


    Very good question/questions!! I have been wondering the same thing!! I would love to hear from anyone that has actually gone into remission too. Sakar
  18. ssakar

    Typical Age Of Dx?

    I was diagnosed with Raynaud's Disease at age 39.......my fingers were turning blue. Approximately 6 months later, I noticed the skin on my entire body was becoming very tight/shiny....everyone thought I had a beautiful tan - but needless to say I NEVER got out in the sun. My muscles/joints started to ache and I couldn't hardly climb stairs anymore. I was finally diagnosed with Scleroderma and ILD in October (age 41). The last 8 months or so I have been dealing with acid reflux and stomach problems. I feel I could have got a better grip on this disease (Sclero) if I would have been able to keep my 3 month followup appointment with the rheumatologist. that diagnosed me with Raynauds. I went almost 2 years without seeing a doctor because I didn't have the MONEY!!! Sakar
  19. Hi, I have really started feeling better the last few days......building up a pretty good appetite again too!! AND - having regular BM's. So now I'm beginning to wonder if I really need to see a GI specialist at THIS moment? Actually I'm not sure what I would say.... I guess my main concern is I know that Scleroderma can affect your internal organs (which it has already affected my lungs). So I keep thinking if I was to have some type of 'over-all' testing done to see if it is going to any of my other organs then I would be satisfied.........but is there such type tests that can be done? I would appreciate any input ya'll might have. Oh and I have Medicaid so not sure what they would pay for ...unless I have specific symptoms for a certain type test to be done? All I know is that I would rather catch something in it's early stages if that is the case. Like with my lungs - I had no clue I had ILD because I really had no symptoms.....so that's kinda where I'm coming from. Thanks for all your help, Sakar ps - I've been holding off on making an appt. with the GI specialist because of all these feelings I've had the last few days. I called my rheumatologist and I still have my followup appointment set for April......but they said I could get in March 9th if I needed to see her earlier. I'm just so confused on what to do right now.......
  20. Hi, I have been taking Colchicine since Jan. 9th. I take it 3x a day. I have Scleroderma and was told to take it to help with the tightening of my skin. I do feel it is helping somewhat. Sakar
  21. ssakar

    Barium Swallow Results

    It is actually my primary care physician. But things are really working out ok because I am moving back to my home (next to my parents) at the end of this month. It is a little bigger town than where I'm at now so hopefully I will find a good primary care physician doctor there!! I've been living with a guy and we have come to conclude that he really can't quite handle my health issues. It will be nice to be next to my parents - but I hate the thought of being alone.....but that's another issue. I just want to get my health issues under control and try to start 'living' a life again!! Today, I called 13 GI specialists (that's all they have in Amarillo). And only 1 for sure takes Medicaid. I'm awaiting a call from this other one that I'm really hoping will accept me because he has experience with Scleroderma!! I'm just totally amazed that not many doctors accept Medicaid patients......that's pretty sad!! I really don't have any 'swallowing issues'......it's just that I don't have much of an appetite anymore. I think alot of it has to do with 'thinking about how I feel after I eat'. I'm so afraid to eat certain foods -and I'm still trying to figure out WHAT I can eat. BUT - I have been eating so that is good!! Now if I can just put some weight on!!! I have been eating prunes each day and I feel they are helping with my BM. I'm just concerned with how they look now......not good. I plan on calling my rheumatologist tomorrow and filling her in on all that has been going on.......tests, etc. Then maybe I can meet up with her to see if possibly my pill regime needs to be looked at? I do have faith that things will work out for the best.....I just still can't get over how poorly the doctor (and his staff) have handled things. I am glad that I will no longer be part of 'their' practice ever again!! Thank you all for your support and for being there for me.......and listening to me vent!! Oh one more thing - so does having a good Barium Swallow test mean that I don't have Gerds? I have never been tested for it.....I just know I have acid reflux!! Hugs to everyone, Sakar
  22. ssakar

    Barium Swallow Results

    Well - I'm pretty much fuming right now. It looks like I will be finding another doctor. I called to specifically talk with the receptionist to ask why they STILL haven't contacted me in regards to my Barium Swallow results. She totally blew me off and transferred me to the doctor. Boy - our conversation was NOT pleasant at ALL. He basically said he has done all he can for me by providing me with what I wanted (the Barium test) and since it came back ok then there was nothing more to do except take my Prilosec daily. I said - but I have Scleroderma and feel I need more tests ran (named a few) and he then began to tell me to shut up and listen to HIM - HE is the DOCTOR - not ME. We were yelling back and forth and it was not good. He said my first problem was that I was reading on the internet too much. And I said - ok - why have I lost 30 pounds in 3 months? I am still not gaining any weight.... my stools now have 'white chunks in them' etc. He did NOT want to hear a word I said...... So needless to say - he said he would still give me a referral and we hung up. I am actually feeling a little better though - I'm somewhat getting my appetite back. I have 2 more days on the Cipro......so maybe it was a virus or something. But I still feel like I should see a GI specialist just to rule out any possible problems. Sakar
  23. ssakar

    Should I Mention This To The Rheumy?

    Yep Mary in Texas.......that is EXACTLY like my ear. It has a little scab on the outter bottom ear lob part. It too gets puffy and red at times.....but it seems to always have the little scab on it. Heidi - that is an excellent idea about cutting the center out of a pillow!! Thanks for the idea :-) Also it seems right now that my skin is doing funny things....very tender in spots it usually isn't. My fingertips are very sensitive to the touch and are getting little indentations in them......kinda like a hangnail expect it's skin that is peeling. I don't think it's actual 'digital ulcers' forming....but it is pretty painful. I just wonder if it's the Cipro that I'm still taking from when I was in the hospital. I still have another week on them.......yuck. Sakar
  24. ssakar

    Should I Mention This To The Rheumy?

    Hello Heidi, I was reading through some of the older posts on this board and this one caught my eye. I too have something wrong with my ear.......it sounds exactly like what you are talking about (the cartiledge on my right ear hurts). It hurts when I lay on that side too. I was just wondering if you ever found out what was wrong? Thanks, Sakar
  25. I wanted to update you all......I did as you all said and got hold of my doctor about my diarrhea/vomitting and losing weight problem. I finally got through to him that the Zelnorm was NOT working and I was very sick. He admitted me to the hospital Tuesday and I just got out today. First of all - is there a good spot for people with Scleroderma to have an I.V.? (feet or neck or where) I had 5 nurses try all up and down my arms/hands and NOT a single one could get an IV in my veins. My skin and veins are so tight. They mentioned a port.......or a central line. I was in tears and they were getting worn out trying to get an IV in. Finally they opted for a butterfly (leaving the needle directly in the crease of my elbow)....which meant I could not BEND my arm the entire time. It was very uncomfortable and scary...but it worked. They basically treated me for a stomach infection. I was pretty frustrated with the doctor because he really still has no clue what I'm going through. The first day I was there he wanted me NPO for 24 hours........I said I was starving and that if he wants me to have a bowel movement then I need to eat something. NOPE - so I feel I totally wasted the first day away. Finally he let me eat and within 4 hours I had diarrhea and I vomitted. He then knew how serious I was. They started an I.V. of Cipro and Protonix for 3 days......then the butterfly needle came out of my arm.......urggh I was dreading the thought of what was to come. But at that point we got in touch with a GI specialist and was told to do a Barium Swallow test (which I will go in the morning to do). So they didn't try to put an I.V. in me because I was feeling somewhat better. The only thing then was I went from diarrhea to no bowel movement at ALL!! So the last 2 days I waited to have a BM. I finally did last night so they released me today. Oh and they also got to see my low blood pressure in action too.......I was getting readings of 70/50 and they were a little alarmed. They put me back on Fludrocortisone. I am a little concerned about the GI specialist......he said that IF my barium swallow test comes back 'bad' then he wants to see me. BUT - if it is ok, then there is nothing he can do for me if it is "Scleroderma" related. Now does that make sense at all? Can someone please tell me what tests can be done by a GI specialist? Isn't there something like a upper GI or a Colon test? Also - has anyone been on Protonix (sp?)? He used that instead of the Prilosec...... Sakar