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debz

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About debz

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  1. debz

    An update on what is happening

    Hi Shelley, Thank you so much for your reply! I am going to discuss this with the rheumatologist when I see him on the 18th Nov, so not too long to wait and I am terrible at waiting hahaha! I had not thought about the small mouth. I am not sure about that to be honest. I do know that last year when my GI doctor did the first endoscopy, he had trouble with the mouth piece, but eventually we squished it in. This time around (dilatation), they couldn't fit the mouthpiece in, so opted for a smaller one. Hmmm, I will investigate this a bit further - Thank you Shelley! I am due to go to the dentist also soon, so will talk to him about it. I am not a frequent 'dentist goer' as I have a severe phobia - but the last time I went he did xrays etc, so they would know if they did some this time if there have been changes? I think I made a bit of a mistake saying that the provocation test showed hypersensitivity, but I think he said hyperreactivity - but I am not sure. I just don't know if his explaination of asthma totally sits with me. Again thanks for the reply, I am going to get my thinking cap on and go through some old photos and see what I can find :) hugs Debz
  2. Hello everyone, I have had a few things going on lately. First I had a dilatation of the esophagus on the 30th October and so far I feel the same....food still feels like it is getting stuck. Does this get better? My GI doctor couldn't do the stretch he wanted to do as I couldn't fit the adult mouth piece in my mouth so had to opt for a smaller one, which meant he couldn't do the medium stretch. I am wondering if that may be the reason why I haven't noticed an improvement. Sorry, that was just what has happened the last month. This month I went for pulmonary function testing. the first lot of tests which tested volume etc were all okay but today I had the provocation tests and it showed I am hypersensitive. Which boiled down to my numbers (I don't know what that was either? was trying to breathe while they were explaining things to me) dropped the 15% very quickly before the test was completed. I was in distress, but once they gave me the ventolin, I was alright after about 6 puffs of it. My husband is asthmatic, but I didn't think I had asthma? I get short of breath, but it is nothing like my husband so this has confused me! The doctor who did the test said I would need to see a respiratory/pulmonary specialist and that my rheumatologist would get the results and discuss them with me. Could this just be asthma? I know you are not doctors and the fact that I haven't been diagnosed with scleroderma, only Sjogren's confuses me more. I have definite dysmotility and GERD and now the breathing issues. I am a tiny bit frightened to be honest. Could Sjogren's be responsible for the breathing problems too? I do have other symptoms, but at the moment the esophagus and breathing problems are taking up most of my energy, which I don't have alot of these days. I am very fatigued which is a huge thing with me. I have been trying to find answers to this for years now! I am going to have serious talks with my rheumatologist! I can't be too hard on him as my old one retired and he is new to 'me'. I am a difficult case and have been very atypical in presentation - their words not mine hahaha! Any thoughts would be appreciated, as I am at a loss to know what is happening right now. The breathlessness is happening way to much! It used to be only when I was exercising etc. now it is happening randomly, when I am not expecting it - like answering the phone - crazy! But I have people asking me if I had been running to answer the phone, when I haven't. I know Sjogren's can do some awful things, is it capable of this? My GI doctor has not commented on what he thinks 'it' is as he has said there is a spectrum that this falls under and Sjogren's can be part of that spectrum....What do you think of this spectrum? I keep thinking of the colours of the rainbow hahaha!! Seriously, I am a bit worried... Hugs, Debz
  3. Hi Sharonvandee, I have just had a dilatation of the esophagus - not sure if that is what you were meaning? I feel as though food is getting stuck and have had dysmotility confirmed with manometry testing. I really feel for you, as GI problems are awful and very hard for family/friends to fully understand. The dilatation itself went smoothly and took a bit longer than an endoscopy. He couldn't dilate it very much as I couldn't fit the adult mouthpiece in my mouth, so they couldn't do a medium stretch and opted for one smaller. To be honest, I haven't noticed a huge difference, but then everyone is different and we all have different results :). I wish you good luck and lots of (((((((((hugs)))))))))). Blacking out because you are not getting enough nutrients isn't fun. Does the doctor know what is going on? Hope that whatever happens re dilatation, that it works for you. hugs Debz
  4. Hello everyone, I have had bad back pain (feels like coccyx lower back pain) for the last six months. I have had mri, xrays etc all say nothing untoward.....gee tell my back that!! I have a lot of pain that I have now started on laser acupuncture, which hopefully, will help. The doctor said it could take 10 -12 sessions, before I notice a difference. I am willing to go with the flow, nothing else seems to be helping and as I can't take anti inflammatories, due to stomach issues, there really isn't a lot of options. My rheumatologist said maybe stronger analgesics, but I am going down the acupuncture route to see how it all goes and will cross other bridges as they arise!! Good luck to you all! I don't know if back pain is scleroderma or not, it is new to me and I haven't been diagnosed officially with scleroderma. It is miserable having continuous pain and no evidence of anything that could be causing it....I sympathise! Take care everyone! Hugs Debz
  5. debz

    Putting things in perspective

    Dear Mando, I am so sorry to hear about your friend! I can so relate to how you are feeling and with all that is going on without a definite diagnosis. I am in the same position, with just about identical symptoms! It is hard to sit back and decide whether you can be content with a 'non diagnosis'. I have been on Plaquenil 400 mg since 2002 or thereabouts and just recently was reduced to 200mgs due to pigmentation on my retina (whether or not is plaquenil related has not been determined) but my rheumatologist has decided it is better to be safe than sorry! I have found since reducing the plaquenil that all the nasty things that invaded me way back when have come back to haunt me! Namely, the fatigue, which has been unrelenting...joint/ muscle pain even skin rashes. I am seeing my rheumatologist again in September, so will be telling him everything. This journey is a very difficult one, even harder when you don't 'really' know exactly what it is you are dealing with (mind you, we all have a fair idea!). I think the most important thing is that you are being treated for the symptoms that are troubling you. I really don't taking alot of medications, but didn't realise that reducing one (Plaquenil) could have a huge impact in such a short time. Mando, I really wish you well. I have followed your posts and feel I can relate to alot of what you have going on. I don't post often myself, but like to join in the chat sometimes. It is comforting to be able to talk to people who are experiencing similar problems in a way. Take care Hugs Debz
  6. debz

    Australian Friends

    Hi Jeannie, I am in Adelaide and we are preparing for bushfires here, as the threat is very real this time of year. I have relatives in Victoria and some very close to the fires. It is unbelievable. Devestating and the death toll that stands at 170 is going to rise. This is the worst natural disaster in Australia's history. To everyone affected by these fires, my deepest sympathy. My thoughts are with you all. Hugs Debz
  7. debz

    I'm back!

    Dear Peanut, It is so great to see you back!! You are amazing!! Wishing you continued good health and lots of hugs too! Debz
  8. debz

    My esophageal story

    Hi Mando, I had the manometry testing, ph testing and endoscopy all in the last few months. I didn't get a report back like yours, infact the gi doctor told me the results. He had mentioned scleroderma to me twice before, but didn't mention it, saying the dismotility 'could' be from sjogren's, but it wasn't common for sjogrens. So I am a little confused. I am seeing him again in July and will discuss stretching the esophagus then. Nothing has changed and I still have all the symptoms I did (not just the swallowing + gi problems, but all the other symptoms) it is a little disconcerting when you don't know exactly what it is you are dealing with. I can't understand why the gi doctor won't consider scleroderma or sjogrens considering your results. I think the fact that he is having it reviewed by an expert is a really good thing. Two heads are sometimes better than one and often experts see things that others don't. I wish you lots of good luck in your quest! Hugs Debz
  9. Congratulations Jeannie!! Look forward to chatting with you again! I do enjoy reading your comments on the forum too! Well done. Hugs Debz
  10. debz

    Australia Day

    Happy Birthday Helen and Happy Australia Day!! We have spent the day keeping cool as it is really hot and we have a heatwave on its way here in sunny Adelaide!! hugs to all Debz
  11. debz

    Update from Gastro appointment

    Thank you Susie, I will see how it all goes, hopefully, there won't be too many issues between now and when I see the gastro again in July. We will discuss the stretching then. Hugs Debz
  12. debz

    Update from Gastro appointment

    dear Irene, Jeannie and Eah, Thank you so much for your replies! I will have the esophagus stretched if that is what is required, but I don't go back to the gastro until July, so have a bit of time to see how everything goes. Irene, I had an x-ray taken of my hands about a year ago now and it did show effusion in the fingers. Mind you the general practitioner didn't really make any comment about it and said that there was no sign of rheumatoid arthritis. The thing is my specialist had ruled out rheumatoid arthritis back in 2002 when I first went to him! It is a little bit frustrating when you don't get definitive answers, but when things are not 'screaming out' at these doctors, I expect it is considered mild and therefore is going to take a little bit longer to properly diagnose. I wish you luck in your continuing quest! Jeannie, the idea of having your esophagus stretched so you could enjoy Thanksgiving, sounds like the perfect answer to me hahaha :) Sometimes I wish I could eat certain foods again. It is funny how you tend to steer toward food that goes down very easily, it almost becomes habit! Again thank you all for your replies! Hugs Debz
  13. Congratulations Susie! I always enjoy chatting with you on Sunday nights (Monday morning/afternoon for me). Great that you are now official! Hugs Debz
  14. debz

    Update from Gastro appointment

    Thanks Kiwimum, Snowbird, Peggy, Mando and Canon for your thoughtful replies! This gastroenterologist is really lovely and the first two visits were great, even this visit was good, although he didn't remember me at first and he did refer to some notes. I do like him and will continue to see him. It is just that he is looking at the gastro problems and I do have numerous other problems including joint/muscles, skin and swelling (fingers and lower legs/feet) also Raynaud's. He didn't address any of those problems and I have been diagnosed as having Sjogren's syndrome, so he did refer me to a new opthalmologist as my last one has gone interstate. I do feel a little abandoned as my old dear rheumatologist retired and I haven't 'found' another (I was under the assumption that the gastro doctor, or my old rheumatologist would be doing this - I guess I was wrong) and it will mean going to the general practitioner (who is useless - a bit harsh - more clueless when it comes to autoimmune anything!) which I will have to do eventually. I seem to have been running around in circles the last few months with doctors so I think I need a breather! Mando, yes, yes, I can relate to a lot of what you have going on. My swallowing problems occurred each time I ate anything solid, but wasn't too bad with liquid, so it is confusing for me. My GI doctor wants to see me in July to see if things have improved with the swallowing - but what do I do in the meantime. Nothing has changed really, I am still having problems and I do drink a huge amount of water each time I eat anything. I don't know about the stretching - it is something I will wait an d see about. Great to hear from you Kiwimum - yes limboland is a weird place still hahaha!! I will keep pressing for answers (thanks Peggy - I do feel the same as you) I know something is really wrong but it is like a jigsaw and I am amazed that no one has said 'da da it is obvious you have this' - nothing is that simple hahaha :) Take care everyone! Hugs Debz
  15. debz

    Update from Gastro appointment

    Thank you Cannon and Margaret for your replies! Margaret, I have been on plaquenil 200mgx2 per day (400mg) since 2002. It did help initially with the joint pain etc. The reflux and swallowing problems compared with the joints/muscles etc are a more newer symptom. I am glad that Gareth's problems with swallowing have improved. I don't really relish the thought of having my esophagus stretched. The manometry findings clearly showed dismotility in the lower esophagus. I am not sure Cannon, what is going to happen about a new rheumatologist - who will put all the pieces together! My old specialist did write a letter to the gastroenterologist who had mentioned scleroderma in the two previous visits. He didn't this time, but then he had to read over his notes to remember who I was.... If and when things get worse, I think I will have to get the general practitioner to refer me to another rheumatologist. I just feel a little let down by the medical profession at the moment. But that is another story!! hugs Debz
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