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Everything posted by kiwimum03

  1. Thanks for your lovely message Sandy, I am sorry to hear you have been having a hard time with gastro issues too. I do hope your new medication can help. I have tried drinking milk, but am not having much luck with dairy, it gives me diarrhea unfortunately, I don't know if it is the milk or the fat. But I will keep chugging along :) thanks again,
  2. Hi Judy, I am definitely going to ask the doctor when I see them for my biopsy results about alternatives to Motilium. I also asked about the meal replacement last time as I am already anemic (I have been for years, which I have been told is due to chronic disease, I have microcytes which are small and pale). They were a bit reluctant to give me meal replacement as I have been vomiting, but honestly I need something. Even if half of it stays down that's better than nothing. :) But I have faith, it will all get sorted, hopefully sooner rather than later. Thanks for your support :)
  3. Hi Judy, I have been on Domperidone previously, but unfortunately I can't take it as I have (for some unknown reason) abnormal lactation and prolactin levels. The Domperidone pushes my prolactin levels even further up, into the 3000's, so I can't take it. It did help me though at the time. It's been about 3 years since I last took it and my stomach empyting has gotten worse, not sure what else you can take for it though? I tried to eat a bit more today, but it was no use. All I got was a sore bloated tummy, epigastric pain and vomiting and chills. I can only eat crackers or small amounts of plain soup, not that I mind as I don't have much of an appetite anyway. But I am happy they didn't find anything nasty in the gastroscope, that does ease my mind a little. Hugs,
  4. Thanks for all the warm thoughts. I went in this morning (Judy, I ended up at Middlemore in their new Gastro wing, very nice!) Unfortunately the scope didn't show anything, not even signs of GERD, which I found surprising. So now I have to wait for the biopsies to come back. I am not sure where I go from here. I have now lost 5 kgs in total, and still have tummy pain, slow stomach emptying and hardly any appetite. It's not losing the weight that I mind about (as I can afford to lose it) it's just the way I am losing it and why. I do know there are more tests they can do, so hopefully now I am in their system it will move along a bit faster. Thanks again for your support. Hugs.
  5. Just a little update, I received a sudden call yesterday from the hospital to go in for a Gastroscope on Monday morning. Hopefully we can get to the bottom of this. Thanks for all your support.
  6. Thanks Margaret, Shelley and Lynn for your replies, I am totally open to any suggestions of what this could be, I guess by writing about it I was hoping someone would read it and go "Oh, I have that too!" , just so I could know what it was :) I went to the general practitioner this morning and he sent an urgent letter to the hospital for a referral. Finger crossed it goes through soon. He gave me some electrolytes and nausea tablets you put under your gum to disolve in the hopes that I can tolerate more food. I managed to keep some electrolytes down today. yay! Lynn, I am pretty sure I haven't been bitten here in New Zealand, but I was in Malaysia over holiday and I managed NOT to get bitten the whole time, except on the last day I got 2 mozzie bites, which were super itchy, but I never had any problems...but that does make me wonder. (I am on antimalarials, so that would cancel out Malaria wouldn't it?) The doctors in the ER were aware that I had been overseas in the last few months though. I am super tired, so going to have a wee rest now. Thanks again for the replies, I really appreciate you all taking the time to read my post. Hugs,
  7. thanks Jeannie, I will let you know how I get on. I had two episodes today where I just couldn't stand up anymore from muscle fatigue and ended up sitting on the kitchen floor, I think I might just need a bag of fluids or something as the electrolytes make me feel sick. Not a fun situation, hopefully the doctor tomorrow will see the gravity of the situation. thanks again.
  8. Hi everyone, just me...............yet again :) Last month I posted about my purple nails and pressure and pain in my chest which ended me up in the ER. Unfortunately I am still having problems and am still yet to see the Gastro Specialist. I have had 17 "attacks" in total since May 12th and have also lost 4kgs (8.8 Llbs), as now every day I have no appetite and can only seem to eat one meal and if I eat any more it will come up. Also struggling to keep fluids down. I went and bought myself some electrolyte powder as I have been getting dizzy and very "floaty" feeling. I have booked myself in to see my general practitioner tomorrow to see if they can hurry up with the Specialist. My question is, do these problems sound like the Esophageal problems one gets with Sclerdoderma? My eating and drinking problems are daily, and my "attacks" happen randomly. I can go 4 or 5 days without having an "attack" or I can get them two days in a row. The attacks still go the same, sudden queer shaking feeling in my esophagus, hands instantly turn blue, right hand shakes, internal chills, jaw locks, then teeth chatter and my tongue doesn't work and I can't form words or talk for about 5-10 mins. After that I have terrible gag reflex and then vomit intermittantly for up to an hour. I get pain in my epigastric area and my back. Totally frightening, but have learnt not to be anxious during these attacks as I know they will pass after 20-30 mins. Daily I have chronic nausea, no appetite, liver, and upper LEFT abdominal pain. Okay I am going to stop my ramble now :) thanks for listening.
  9. Hi All, just a little update, I saw the Cardiolgist on Thursday and after all my worry, they do NOT want to do the right heart catheter right now. They are going to do another Echocardiogram first and then decide. As I have no shortness of breath they didn't really want to do an invasive test. But the Cardiologist did say they would keep a good eye on me, as sometimes by the time the Pulmonary Hypertension is producing symptoms it has been there for a while, and he would like to catch it early if it is going to present itself. Smart man. thanks again for all your help and advice on this subject. Hugs,
  10. Thanks Craig and Miocean for your replies and advice, It's good for me to have an idea of what to ask the doctors. Now I feel am fully prepared :) Judy, you make Auckland Cardiac unit sounds quite pleasant :) ......and it's only 25mins away from where I live, so thats a bonus! I'll let you know what happens after I see the specialist. Hugs to everyone!
  11. I just wanted to thank everyone VERY much for sharing their experiences with me. It has helped calm my nerves about this subject and now I feel if the Cardiologist does press me to have the procedure done then I will be "ok" with it. You were all very honest and descriptive which is what I needed! You told me the "in's and out's" of the procedure, which was really good to know. I am a step by step kind of girl, and need to know everything! Amanda...........thank you for being very descriptive about the shaving....LOL...something I hadn't thought about, until now, but good to have a heads up on that subject :) Judy, I am in Auckland, so I presume that is where it would be done. I don't see my Cardiologist until June 17, which is when they want to review my file and see if they need to do this test. They talked about it 6 months ago, and again when I was in the hospital 2 weeks ago, they were all for going ahead with it, so we will see. I just want to be mentally prepared, as I freaked out when they talked about it the first time. Thanks again everyone, I appreciate you all! Hugs
  12. Hi, when I was last in the hospital two weeks ago they were thinking of ordering a Right heart Catheterization. Now I have been called up to see the Cardiologist as an outpaitent in 2 weeks time, and I am pretty sure they are going to bring the subject up again, wanting me to have this done. I know I am probably being silly, but it sounds really scary to me. My father had it done years ago and his catheter snapped during the prodcedure. Now I know he had severe blocked arteries, and that was the cause for the catheter to break, but I am a little freaked out about something going in my body to my heart. I know the doctors do this procedure all the time, so it must be safe. I am just wondering from those of you who have had this done, how you found it and how it felt? I know everyones experiences are different. I just tend to worry alot about things, even if I don't know if I need to ! thanks!
  13. Thanks for your thoughts and great comments enjoytheride, I have had to eat very small meals so I can take in more fluid which has helped my dehydration thank goodness. I also now dont' drink or eat anything cold, that helps too. Thanks for your suggestions.......hopefully I get my gastro appt soon. fingers crossed x
  14. Thanks Shelley and Sandy for your replies, I have had no more attacks (eosophagael spasms?) since Thursday night, but am still unable to eat or drink much without it floating back up and I am very nauseated in the mornings. My lips are cracking so I suspect I am a bit dehydrated, so I will go back to the doctor tomorrow as I have high blood pressure and I am worried about the effects of dehydration on my kidneys amongst other things. After a bit of reading I am wondering if the Vagus Nerve might be involved when I have my attacks as that might help explain the blue hands and uncontrollable teeth chattering, purely me just theorizing of course! Sandy, I have had a bit of wind, not too much, and in the beginning of my attacks I didn't but now I have been getting terrible gripe pains midday, but I am swinging from constipation to diarrhea, so I don't know about that. I am only eating vegetable soups as anything more solid just doesn't seem to want to stay down. The other problem I have been having at night is that I feel like I have something stuck in my throat, almost like the back of my tongue touches my throat and I can't breathe, even though I can. Then my food comes back up and the sensation goes away, so I guess that is just the food sitting just under the larynx or something........again speculating! (which is all I can do :) Thank you all for letting me vent and chat, it is extremely helpful and encouraging to have such support. Hugs
  15. Sorry you are having so many skin changes Pam, I too have changes on my face, and I am not happy about it, i don't want to look different either! I have yet to see a dermatologist about it yet though. I keep meaning too, but I don't know whats holding me back. I would also be interested in anyone elses experiences with Methotrexate as my rheumatologist suggested this on my last two visits and I just don't feel ready yet, I don't know if its because I don't have a proper diagnosis or I just don't want to put any more pills into my body. Big hugs xo
  16. Thanks Pam, Vanessa and Shelley for your lovely replies. I went and saw a new general practitioner yesterday, as I was having trouble keeping food and liquids down. He is referring me to the Gastro Specialist ASAP and told me if I have any more serious attacks or if my food doesn't stay down by tomorrow to go back to the hospital. I had a small attack last night 10mins after taking my nighttime medication. I took care not to panic and breathe slowly through the pain, as the last few attacks I am certain I panicked like Shelley said which caused the shortness of breath and shaking. This time my hands still turned dusky blue, and my teeth still chattered, but I DIDN'T have shortness of breath or the shaking hand thing. Today luckily I have kept all my food and drink down, I get full after only a few bites and I have a gag reflex after about 10mins and I can feel the food coming up, but I managed to keep it down. So far today no major epigastric pains, although it is obvious my dysmotility has gotten much worse. Still today I feel a bit better and hoping for a pain free night. Thanks again for the replies! Hugs x
  17. Hi, I am just wondering if anyone else has any ideas on this. I ended up back in the ER over the weekend for 3 days. One doctor mentioned CREST, one doctor said Eosphageal spams and one doctor said a breathing disorder. Since coming out on Monday, I have had three more "attacks". My husband almost called an ambulance, but I managed to suffer through it for a hour until it eased, as I didn't know what more they could do. It has come to the point where I am too scared to eat now, as I think that triggers the attacks, I already lost 3kgs in the hospital, no one seemed worried. I am going to a different general practitioner today to see if they can piece it together. My attacks go like this: Chest pain, and then pressure across the ribs, pain under my left breast, the ribs are very sore to touch, VERY bloated stomach. Shaking, or spasms start in the middle of my chest sort of in between the breasts, my nails turn purple and my hands turn blue, my jaw locks and then my teeth start chattering, and my right hand starts shaking. After about 10mins this eases and then the pressure in my chest starts and my throat feels thick and I have to whisper. This lasts for about 15 mins, and then it eases and I am left with a very sore back and chest for another hour. Very scary and frightening. In the hospital my ECG was NOT normal, they were going to order another one, but then they didn't. The had me down to have a Gastroscope done, but then another doctor came on and said I must have a breathing disorder and cancelled it. My blood pressure was up and down. Normal for me is 130/90 on meds. In the hospital it went down to 108/52, and before I left it was 111/100. I am remaining calm and doing all the breathing exercises they told me, that is helping to keep me calm, but it doesn't stop the attacks which seem to come on about an hour after I eat something solid (hence the reason I am too scared to eat) oh I forgot to mention that I get very cold inside when I eat, and also during the attacks my insides are freezing. It's like my body goes into shock whilst something is happening in my stomach? I am not asking anyone to diagnose me, this is why I am going back to the doctors today I am just wondering if anyone out there has any ideas, could this be Scleroderma eosphagus, or a stricture? Thanks heaps
  18. Thanks to everyone for their replies, I am still sore today, with pressure in the chest but no shortness of breath. Unfortunately I have woken up with arthritis in my feet which I haven't had in a long time, it seems like the inflammation is doing the rounds in my body. Vanessa ~ thank you for the encouragement. My kids are such a blessing to me and bring me so much joy everyday :) when I woke up from a nap yeserday, here were my three little boys with their toy doctor kits out, masks on their faces, putting plasters on me. Bless them. Erika ~ I hope you get some answers to your chest pain too. It's quite scary isn't it! Interesting you mentioned the Xanax, I just remembered on reading it, that I had reduced my Amitriptyline the week before, and I know that can relax the muscles, so perhaps by me reducing it triggered something?.......again I am speculating, but if I don't who will? Sheryl ~ I have had what the doctors told me was Costochondritis in my chest before, I found that pain to be quite sharp and uncomfortable, this pain does seem different, but I am not ruling it out that it is presenting in a different way. I will chat with the rheumatologist about it. Sandy ~ I think that the pressure in my oesophagus and the shortness of breath must have something to do with my GERD. So perhaps I am in a flare causing patches of inflammation in the ribs that is extending up to my chest and oesophagus as well. Just speculation mind you! I have only just seen the rheumatologist 4 weeks ago, and did mention pressure in my throat that I have had on and off over the last few months. She just said it was my GERD, but that doesn't help that it is getting worse (well I think it is), I really think perhaps I should ask them to have another look down my throat. I had a scope done about 3 years ago, but I really feel things have changed alot since then. Thanks for all the great thoughts and advice, you guys are awesome. I will let you know if I learn anything new, for now I am staying quiet and calm, i really don't want another flare like the other day. Big Hugs :)
  19. Hi, I just wondered if anyone else had this kind of problem? I ended up in the ER last night after my husband called an ambulance. I have had very tender ribs on the left side (spleen area) and a dry cough for about a week. and then yesterday I felt like someone was squeezing me from behind and a lot of pressure in my chest and felt like I couldn't breathe. I ended up hyperventilating and my hands turned purple, hence my husband calling the ambulance! Poor guy. I was in the ER for 6 hours, the first two hours I couldn't even talk without sounding drunk because of the pressure in my chest and hyperventilation. They ran a gazillion tests, did a chest x-ray and a arterial blood gas test and found nothing wrong thankfully. Their conclusion is that it is related to my connective tissue disease and I must have inflammation in my ribs and chest. As they couldn't do more for me they let me go home, but as long as I promised to come back if I got short of breath again. Today the pain is still there, and I still have some slight pressure in my chest, but no SOB (shortness of breath) anymore, I am just uncomfortable. I have been on Plaquenil for 4 years but am contemplating Methotrexate, would that help more with the inflammation? Thanks! Hugs :)
  20. Thanks Andrea, I'm still waiting to see the doctor, but in the meantime I think I have realized that is probably Raynaud's just presenting in a different fashion. I have had the discolouration in my nails for a week, but the last two days in a row, my hands have gotten very cold, gone white and my nails a startling dark purple! (not the skin, just the nails) It is also much worse at night. I finally got my hands warm again last night and my nails and hands went pinky red and sore. It has kind of taken me by surprise, I didn't think Raynaud's just kind of 'popped up', but then it has to start somewhere doesn't it. Thanks again for listening!
  21. Thanks Jeannie and Margaret, Yes I think a visit to the doctor is in order. I was foolishly hoping it would go away, but even my husband noticed this morning that it was worse. Interesting you mention lungs Margaret, as I had a work-up for Pulmonary Hypertenson late last year as it was indicated on my last chest-xray. But as I have scoliosis they can never get a good views of my heart and they couldn't check the valve output. So I did an Exercise Stress Test, which was normal and since I had no other problems apart from a funny x-ray, they left it at that. They said if I did have any problems in the future that indicated Pulmonary Hypertension then they would do a Right Heart Catheter test. My father had a couple of Catheters horror stories when he had it done, and I am terrified! But of course if it needs to be done.... When thinking about it all, I have also had a hoarse voice for the last 2 months, which my general practitioner has been treating with Solox as she assumes it is from my Gastritis, but the Solox is not helping and I still have the hoarseness, and lately a bit of pain and pressure in the chest and back. Its so hard to know what indicates Reflux and what warrants further investigation. I also developed Postural Hypertension last year, but again as it was a stand alone symptoms my doctors weren't worried about it. *sigh* I have gone 4 years with no definite answers, only that I MIGHT have Lupus, so I haven't posted on the boards in a long time (but still read). But as my ANA has changed from Homogenous back to Diffuse Nucleolar pattern, I thought that perhaps I had better investigate scleroderma even though my doctors don't feel that's what it is. Thanks for listening to my rambles!!! I really appreciate it.
  22. Hi, I am not sure what is happening, but on Monday I noticed that my nails now have a blue/purplish tint to them, just below the lunula (the half moon white shaped cuticle bit). It follows the curved line of the lunula for about 3mm and then it is just normal pink nail bed. I woke up this morning and now noticed that the lunula is now no longer white, it too is changing colour to a purple-y colour. It doesn't seem to have anything to do with hot or cold like Raynaud's. I don't really have what I would call Raynaud's anyway. My finger tips will sometimes get pale when I am cold, but I have never had any major colour changes with them. But hot or cold doesn't have anything to do with this at all I think, it is the nail bed that is taking on a new colour. Any ideas would be welcome. Its just so weird that it has happened in a few days. The only thing I have done differently over the last couple of weeks is reduce my Amitriptyline from 20mgs down to 5mgs. Another thing I should add, and not sure if this is relevant either, is that I have had horizontal ridges continually over the last year on my nails and in the last 3 months I have now developed tiny indents like someone has put a pin in my nails and the ridging is slowing down and getting further apart as I get more pitting. I am still undiagnosed, just tentatively sitting with UCTD. Thanks!
  23. Hi Pam, just wanted to send you big hugs. I hope all goes well with the Biopsy and they can figure out what it is and get on with treating it. Thinking of you! Irene
  24. Hi Bee, I just wanted to share my story with you which of course is ongoing. Almost 4 years ago when my arthritis and fatigue started my ANA was 1:320 Nucleolar Difuse pattern and a high CRP, totally freaked me out. Now a few years later, I have never had another ANA with Nucleolar pattern, it is always Homogeneous, but I have developed sausage fingers, dry eyes and mouth, and still have arthritis. Two years ago my rheumatologist started me on a trial of Prednisone to help the arthritis which was bad by that stage, and then weened me off and put me on Plaquenil, which after about 6 months, helped my fatigue. I am still tentatively diagnosed with Undifferentiated Connective Tissue Disease (UCTD). I hope it will stay at that, but in the meantime I have a wonderful rheumatologist who treats my symptoms regardless of what my blood tests say as sometimes they do not correspond with my symptoms. I wish you all the best, you have found a wonderful place and wonderful people in this forum. Kind regards, Irene
  25. Hi , Just to let you know how I went with the rheumatologist. He wasn't concerned about the positive anticardiolipin antibodies, just noted it as interesting and that he will keep an eye on it. so that made me feel a bit better. He gave me a cortisone shot in my shoulder, which has relieved about 45% of the pain, so it has taken the edge of it, thank goodness, I just hope it lasts. He said that if my flares don't come under control he may have to add a small amout of Methodextrate in with the Plaquenil, I did a bit of reading about it and it sounds like a strong drug with side effects, so I think I will have to do more reading before I go on it. thats pretty much it for now. x
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