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Posts posted by debz

  1. 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...





  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. 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. 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. 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

  8. 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

  9. 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

  10. Thank you Cannon and Margaret for your replies!


    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

  11. Hello everyone,


    I had my follow up appointment with the gastroenterologist this morning. I had an endoscopy back in September and then in December went for manometry and ph tests. He had the results and it seems that I have reflux which I take Nexium for. The manometry revealed the lower part of the esophagus is not working when I swallow food. He didn't mention scleroderma to me but said that if I am still having problems with the feeling of food getting stuck (which it is) I would have my esophagus stretched. He didn't say that there was anything else that could be done for it. Is that right? I had questions I wanted to ask, but forgot once I was in there! I am to continue with my Nexium as it is helping the reflux. I am still no closer to finding out if I have scleroderma along with the Sjogren's, but that is alright, so long as my symptoms are being addressed. I feel a little in limbo land though as my old rheumatologist retired and I did think that the gastro was going to refer me to 'someone' depending on my results for these last lot of tests. I am not feeling let down or anything, just a little limboish :) I know you all know what I mean :lol:


    I did get a new referral to an opthalmologist as I am overdue to have my eyes checked. I have been on plaquenil for sometime now- well since 2002. So that is my news. I still have all the other symptoms going on but I am not feeling any worse than normal with all of that. The only newish symptom was the feeling like the food was stuck. Better go, hope you are all keeping well,


    hugs Debz

  12. Hi Christy,


    Glad we got to chat, even for a short while! I love the chat, although, because we have our daylight savings now, I am finding it hard to adjust the times!! So I have missed a few Sundays (Monday for me).


    Hope to see you in chat again soon.


    Hugs Debz

  13. Hi Kam


    Yes it is the manometry test. I am glad to hear that your investigations were so thorough. Having doctors who don't give up and look at all possibilities, is important with these diseases.


    Hope your esophageal problems continue to be kept at bay.




  14. Hi Janey,


    Thank you for your reply. You are right, it would be great if one test could provide all the answers to everything. It is frustrating, but at least it is being investigated. I have felt my swallowing problems becoming worse, or rather the feeling of having food stuck in my esophagus becoming worse. I have had reflux for about 3 years the swallowing problems for less than that.


    Again thank you Janey for the links you provided. I expect I will just have to wait until January before I get any answers, or then again, the results may not be as abnormal as the technician thought they were.... and I have been thinking about it too much! Oh dear!


    take care,

    hugs Deb

  15. Hi Mando,


    It sounds as though we are in the same boat so to speak! I am sorry you haven't got an answer as to what is causing your problems. It is frustrating. I understand the not wanting a diagnosis of anything - but knowing what is happening and why can only help in the treatment of such and everything I have heard and read says early treatment is important. I am on plaquenil, nexium and norvasc for the raynaud's. I am sorry to hear that your raynaud's is getting worse.


    My old specialist (who has now retired) thought that I had probable lupus, but the more things crop up and new symptoms appear (like the swollen fingers) it to me is more along the scleroderma side of things. Not everything that is happening to me can fit under the sjogren's umbrella, which can confuse me a bit, as I would love it not to be anything. I have been on this journey since 2002....so I am hoping that someone, somehow can piece this all together eventually and say to me this is what you have.


    Good luck with your endoscopy....I am glad that your gastroenterologist is thoroughly investigating the causes of your problems. My gastroenterologist is similar in that he is thoroughly investigating my swallowing and reflux issues. Hopefully, in time, the pieces of the jigsaw may fit together....I hope so. So long as each symptom is treated, I can wait (even though I am not good at waiting hahaha :) ). When are you having the endoscopy Mando?


    Take care,

    Hugs Deb

  16. Hi Mando and Kamlesh,


    The test that I had was to assess the peristalsis of the esophagus. They put a tube (rather large!) down my nose and into my esophagus and then had me lie on my right side while I sipped small amounts of water at various intervals. Then I sat up and did the same. It was all visible in graphic colours on a big computer screen. Then I was given small pieces of bread to chew and then swallow at various intervals. This is where the problems were clearly visible on the screen. My esophagus did not propel the food down to my stomach and I felt as though I needed to drink water (which I had to do to get it to go down) to get it down. The screen showed no visible colours half way down my esophagus. She (the technician) said that it should have shown colours all the way down to the stomach sphincter....which also was not behaving in a 'normal' response to having food in the esophagus.


    This test lasted for about 1/2 hour or so and then they put the wire down for the ph testing. I was told in the information that was sent to me that I would have to swallow small pieces of bread....maybe they do the tests differently here (Adelaide, Australia) to the USA.


    My gastroenterologist has not ordered any barium swallow test for me, I have just had the endoscopy followed with these manometry and ph tests. I really don't know what the results will be, as the technician said my doctor will explain what these results are and what they mean.....I am just not good at waiting hahaha!!


    The tests themselves although uncomfortable and very wierd feeling, were tolerable. I don't think I would like to have them done again though!


    I think with all my other symptoms, raynaud's, joint pain, muscle pain, swollen fingers and legs, from the knee down - sjogren's syndrome, GERD and now the motility problems, hopefully they can sort things out and give me some answers. My old specialist (who has now retired) said that my sjogren's was secondary to something...problem is my ana which I found out went up to 1:640 homogenous has not given any indication via ENA as to what autoimmune problem I have. I have not tested positive for scleroderma, although he tested me numerous times for it.


    Sorry for the novel again! Hope everyone is keeping warm.


    Hugs Deb

  17. Hi everyone,


    Well, I had the manometry (I hope that is the right spelling) and ph test. The first part with the water was okay and everything looked 'normal'. When I had a small piece of bread the results became abnormal (5 out of 5 times) and the technician was a bit shocked. She said she hadn't had a reading like mine yet! I too was a bit shocked, as I thought because everything went well when I was swallowing the water, that it meant everything was okay,. The 24 hour ph test showed that I have reflux (I have been on nexium now for almost 3 years), so there wasn't anything unusual there, but all these results now go to my gastroenterologist. I don't see him until the 16th January and the wait is going to be the hardest.


    He has mentioned scleroderma to me the two times I have seen him and he was the one that suspected motility problems. I am not sure what this is going to mean for me? Does the motility problems remain as they are? Do they get worse? I know you don't have the crystal ball I am looking for, but because I don't have a diagnosis of scleroderma, just suspected....does this now mean that it is scleroderma? Or could Sjogren's syndrome affect motility too? January the 16th is a very long way away for me right at the moment.


    Hugs to you all,



  18. Hi Ohboy,


    In answer to your question with the dry mouth and when it started in relation to the eyes.....around the same time. I say that it was around, because it sort of crept up on me! I found myself drinking alot of water and especially when I ate and also found that my diet changed somewhat. I tended to eat foods that were easier to go down....really without realising all of this. I was very unaware of the connection with my 'inflammatory poly arthritis' as diagnosed by the first rheumatologist and the dry eyes/mouth connection - a little dumb I know, but I never thought they were connected until the general practitioner I saw while on holiday (the one that discovered the dry eyes) explained it all to me. It was then that I realised just how dry my mouth was and of course when I saw my dentist not too long after that, he confirmed the dry mouth....also the amount of cavities and crumbling teeth! I am terrified of dentists too!!


    I hope I have helped in some little way! Let me know what the doctor has to say about your new symptoms. Take care,


    Hugs Deb

  19. Hi Ohboy,


    I have sjogren's and ? about scleroderma, or other connective tissue disease. Please keep in mind I am not a medical professional and as others have pointed out everyone is different with how these things affect them.


    I began my sjogren's journey with pain behind one eye. No one thought it was sjogren's as I presented in an atypical fashion. A very astute general practitioner thought I may have a corneal ulcer and put dye in my painful eye. It all clumped and it was then that the dry eyes were discovered. I had been seeing a rheumatologist who took me off plaquenil in the December (it was April when the eye pain started) and I had thought everything was good.


    The sjogren's was later confirmed by an opthalmologist and then my current specialist (he has now retired) and no other explanation could be given for the pain behind my eye. Once I received correct treatment the pain went (I was on steroid drops for 2 weeks, then replacement tears during the day and gel at night). I do get swollen eyelids from time to time, especially the skin under my eye...feels like someone has punched me!! My eyes blurr constantly, and again there is no rhyme or reason for it!


    I do think you should go and see a doctor about the pain behind your eye and get it properly checked, as it could be a number of things. I just thought I would share what happened to me with my presentation of sjogren's as we are all very different. Surprisingly, my dry eyes and dry mouth now are the less severe of my symptoms....Oh how things change!!


    Hugs Deb

  20. I can relate to this thread! I have been diagnosed with sjogren's and may have more going on. My general practitioner told me that sjogren's wasn't autoimmune and that I didn't have any autoimmune disease and basically was a hypochondriac. She had sent me to a rheumatologist that I saw once and because my ANA was 1:160 and my esr was raised he said that it couldn't be autoimmune. When I went back to see him he told me to reassess my life, my marriage and move on! I did, never seeing him again!! I am still happily married (26 years!) and am very happy with my life, it is my health that is an issue! I do think alot of doctors lack compassion and empathy when dealing with these diseases. If and when you do find a great one, you hold on with both hands and don't let go!!


    Take care,

    Hugs Debz

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