debz

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Everything posted by debz

  1. Hello everyone, I haven't been diagnosed with anything apart from sjogren's and that it is secondary to 'something'. My specialist keeps telling me I am evolving. I saw a gastroenterologist this afternoon, because I had been having break through reflux and feeling as though I had a lump in my throat along with nausea. He was really nice and asked me alot of questions (thanks Sheryl, I was prepared) and was very interested in my hands and my raynaud's. He asked me if my specialist had mentioned 'scleroderma' me before. I said he had mentioned it only in passing, along with mixed connective tissue disease, lupus and others. He said that alot of my symptoms are very much scleroderma and possibly a cross over with sjogren's in the mix. I am having an endoscopy and motility test on the 17th of this month and he said he will then be advising my specialist who to refer me to after that as my specialist is retiring at the end of this month! So that is where I am at right now. I am still a bit scared and was taken aback that he mentioned scleroderma when he saw my hands. He said the skin is tight on the fingers and of course swollen. He said he sees alot of sjogren's/scleroderma patients, so he did make me feel confident in him. Hugs to you all Debz :)
  2. Hi Lou, I haven't been diagnosed with scleroderma....it is one of the possibilities and has been 'mentioned'. Like you, I was asleep when they did the endoscopy :) which made things alot easier. I think the most anxious I felt was right before the procedure. Thank you for your reply....this is really a wonderful place, with a wealth of information and support. I don't reply much to posts, but I do read and try to remember as much as I can! Hope that you can feel not so alone being here! It is hard when people don't understand the nature of these diseases and that is why being here is great, everyone understands the ups and the downs. Take care, Hugs Deb
  3. Hi everyone, Had my endoscopy :) Not as bad as I thought it was going to be. The gastro guy said that things looked o.k. He said that my sjogren's is playing a part in my discomfort as I am not producing enough saliva while I am eating. He did take biopsies, so I will get those results when I see him next month. I am glad that there wasn't anything drastic going on. The reflux was confirmed and he said that I may need to increase my medication, but will be writing to my specialist about it. I see my specialist on Monday and he is going to refer me to another rheumatologist....I will be really sad to say goodbye to him, as he has been very good to me. Anyway, thank you all for your wonderful support, it really helped ease some of the worries I had about the endoscopy!! Hugs to all Deb X
  4. Thank you Sweet, Smac and Bookworm. I am getting less nervous about it all. I expect as the 17th gets closer that will change a bit. I just hope that it sheds some light on things and will help with the quandry of what my sjogren's is secondary to? I think that it will also help my specialist to decide who he will send me to when he retires at the end of the month....I will be quite sad, he has been a great doctor! I am nervous about seeing another rheumatologist...because like alot of you, I have seen a couple that really shouldn't be seeing patients. I don't want to experience anything like that again. Take care and again, thank you for all your encouraging replies, it really helps! Hugs to you all, Debz
  5. Thank you all for your support. It really means so much! I am nervous about the endoscopy, but the gastro doctor showed me exactly what he would be doing and that I would be under sedation and wouldn't remember any of it. That helped a little. My husband was fantastic....he confided in me later that he was upset when the doctor mentioned scleroderma, but as this has been going on for a long time now, I don't think it came as a complete shock. We are heading into our spring here (Adelaide, Australia) so as the weather warms up, I hopefully, will feel a bit brighter! Again thank you all and thank you Sheryl for chatting with me and helping me through some of my worries and questions! You are a champ! Hugs to all, Debz
  6. Ingredients: 1 cup of unsweetened apple puree (I buy tins of apple and freeze the left overs) 1/2 cup of cocoa 3/4 cup self raising flour 1/2 teaspoon of baking soda 1/2 cup of sugar 1/2 teaspoon salt 1/2 cup of dark chocolate chips Method: 1. preheat oven to 175 celcius (sorry don't know how to convert to farenheit) line a 20x20cm dish with nonstick baking paper (or grease with a little oil) 2. place apple puree into a bowl. Sift cocoa, flour and baking soda over the puree. Add sugar and salt. Mix until just combined (over mixing will make brownies tough). Gently fold in the chocolate chips. 3. Pour mixture into prepared dish and bake for 25-30 minutes, or until centre feels set but still fudge-like when a skewer is inserted. Cool in dish for 5-10 minutes before turning out. Slice into squares when cold. This recipe is very yummy and my family love it! It is quick and easy and tastes delicious! You can even heat it slightly and serve with a low gi icecream to make a lovely dessert!! Hugs Deb X
  7. Dear Lizzie, Glad the brownie turned out!! I forgot to mention that I buy unsweetened cans of pie apple and then puree it with a hand held blender thingy. I use the 1st cup for the brownie and then freeze the left over in 1 cup lots.... Of course depends on the size of the tin of cooked apples I buy lol ! I am not sure how to convert the cup measurements.....we are metric, I think that 1 cup is approximately 250 mls....but with my foggy brain, I could be wrong hahaha! Anyway glad it turned out regardless! It is yum and to think it doesn't have any butter or margarine in it, makes it that little bit more 'healthy' !! Deb
  8. Hi everyone, Just a bit of an update...I was the one with the 'evolving' disease! Saw an immunologist which was a total waste of time....Went back to my previous specialist after a 7 or 8 month break. My blood results came back with quite a few abnormalities. He is still unsure what is going on with me, but I continue to become more unwell! My ana is back up again, my C3 and C4 are misbehaving and my immunogoblins or something are not right. He knows I have raynaud's and sjogren's, but still feels there is something more. He was leaning towards lupus as well, but after this lot of blood tests he has taken some more that he hasn't taken in the past. I am being treated with plaquenil, nexium (for the GERD) Norvasc for the Raynaud's and I take painkillers when things get bad with the joint pain. It was quite a shock this time around as he said there were 6 abnormalities on my blood test results. Usually, I have one or two. I am feeling quite overwhelmed with it all. I am away on holiday next week and in one way I am glad to be getting away, but on the other hand I know that I will not be able to keep up with everyone. There are so many things planned. Take care everyone, Deb
  9. I hope this is o.k.! I was born in NZ also. I lived in Christchurch until my husband and I moved to Australia 26 years ago! Deb :blink:
  10. Hello Irene, I know that when the woman was doing the ultrasound on my liver she was shocked. She did say she has only seen that kind of liver on someone who is an alcoholic. My specialist didn't seem worried at all about it! I am though! I am seeing an immunologist next week, so hopefully, he will start putting all the pieces together somehow (I am hoping! With fingers crossed) and help me with all the problems I am experiencing. I hope they can help you too, especially as your father had this liver problem! Sending lots of positive hugs your way! Deb
  11. I also suffer from liver pain. It sometimes feels as though my liver will burst. I seem to always have a nagging pain over the area just under my ribs. I do have a fatty liver, no one knows why as I only have an occasional drink (socially...not much at all). Deb
  12. Thank you all for such a warm welcome! :D I am not sure I really 'belong' here, but my story that brought me here is a very long one....I won't bore you all with it. I have been seeing a specialist for 5 years now and we are no further in the diagnosis of any disease other than sjogren's....He has told me he feels that there is something else happening and that my sjogren's is secondary to it. The first rheumatologist I saw thought I had RA. I don't know what 'it' is all I know is that I am ill alot and not knowing what is happening to me is so frustrating. I am seeing an immunologist in February, so hopefully (I do say that in a skeptical way) he may be able to help me find out what is going on. It has taken a change in general practitioner for this to take place as she felt I wasn't getting the correct treatment from my specialist. My main symptoms are swelling in the fingers, feet, lower legs (with pitting odema) and pain in my hands, wrists ankles and feet. I suffer from raynaud's also. I also suffer from GERD which I am taking nexium 40mg for. In the 5 years of seeing my doctor I have never had an endoscopy etc. He handles all issues I have. I saw an opthalmologist for my eyes and he did a rose bengal test which determined my eyes to be extremely dry and concurred the sjogren's diagnosis. I was put on steroid drops for 2 months along with tear replacement drops and gel for night time. May sound a bit wierd, but my eyes are really the least of my problems. My stomach problems are worsening and the pain in my hands are also getting worse. My index fingers have twisted and my pinky on my right hand is off on an angle at the middle joint. I have had xrays which do show degeneration of joints....also reported swelling. These xrays are not alot different from the first ones I had taken with the first rheumatologist. It did not show erosive arthritis. As you can see, I am at a bit of a loss as to what is going on. My specialist sent a letter to my old general practitioner stating he 'thought' I may have lupus....I think the idea of the immunologist is a good one. My ANA was positive for 3 years at 1:320 homogenous and I have had other wierd blood abnormalities but nothing to pinpoint what is going on. The last blood test I had showed a negative ana, which shocked me as I am still feeling so ill. Sorry this is so long....believe me I could have written a novel!! Thank you for your support. Until I know what is going on with my crazy body, I will stick around and read as much as I can. Thanks again Deb
  13. Hello, I haven't been diagnosed with scleroderma, but have sjogren's and 'evolving' according to my doctor. :blink: I have alot of symptoms of scleroderma, but get confused as there seems to be a commonality in symptoms with alot of these autoimmune diseases. I just wanted to say that I have terrible problems controlling my cholesterol levels. I was quite ill last year and my specialist ordered blood tests. He said "at least your cholesterol levels will be down", as I had not eaten for 3 days......... :unsure: Well it turned out my level was 8.5 the highest it has ever been! He had no explanation for it and it really worried me. I never had any problems with cholesterol until all the wierd things started happening to me with this disease that I have (whatever it may be :( ). H