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Everything posted by georgieoz

  1. I went to the doctor today, he was fairly sure that the burning is scleroderma; I have found that putting an ice pack wrapped in a towel best relief .......most of the appointment was taken up by my high blood pressure it was 237/123. Luckily I had a BP tablet that drops BP instantly in my bag so once we got that lowered we only had a short time left to address the nodules. Anyhow cutting a long story short, he said to have a blood test first to check the thyroid function and then he said he would need to do a biopsy ... if results are good meaning thyroid function test good and it's benign then given my medical history we would just monitor it etc; if not good results we would cross that bridge when we get to it .... so that's that; I'm just pleased to be getting relief from the ice pack it's heavenly ......
  2. Thanks judyt and Shelley for your input , first off I just have to say to judyt your greeting of g'day cobber was soooo delightful I haven't heard the g'day cobber greeting in years. T'was like music to the ears of a true blue fair dinkum Oz ! lol lol .... Yeh Shelley after I posted in to the site I realised too late that it really was not something ya could help me with. I guess I was hoping someone else might have had the burning thingo ... I spoke to my nurse today she thinks also( what judyt said) that it could be the sclero (vascular side of it) that is burning my face but says thyroid could not be ruled out yet until I get tested etc , have an appointment with doctor tomorrow .... She also reminded me that before I went into sclero renal crisis that I burned then but not my face; my whole abdomen burned went red for about a month then I peeled then renal crisis; it has been suggested that although scleroderma effects everyone differently in my case burning could be a tell tale sign of sclero flare ups ..but of course no proof of that just a theory .... thanks ladies
  3. G'day, it has been a long time since I posted. I've had a lot of changes, some good some a tad worrying. I was wondering if anyone can shed some light on my latest symptoms? My face is burning hot; it feels like bad sunburn, the skin is red and hot to touch, and severely dehydrated. It looks like I aged overnight. The skin took on a leathery appearance. Is this sclero or is it related to my newly diagnosed nodules in the thyroid gland? The report said 'multiple nodules one being 2.7cm which has interior vascularity? I'm not sure what all that means but at this point tis the least of my concern; I'm more distressed with this constant burning face. Anything like cream or water just evaporates off it. Ugh. Can someone shed some light on what's going on here, please? Thanks, Georgie
  4. Wow mioceans, You have got a lot on your plate. I also do dialysis I do peritoneal dialysis 4 times a day seven days a week. It can consume your life and be very tiring then add to that all the other medical issues we get with systemic scleroderma it can all be very over whelming at times. I nearly went down that black hole trying to deal daily with a myriad of symptoms then I decided it was time to sink or swim, but to swim I had to work a bit harder. I devised a plan that my pain psyche taught me I just revised it so it fitted my situation. It worked wonders for me. I have not had a miserable day since I am as happy as pig in mud, yet I do dialysis still, I have a nerve disease , Raynauds, tendonitis, spastic hands and feet, I need a walker to walk and hands are near useless. Medically I am a mess because of systemic scleroderma, yet I am as happy as can be. Because of the state of my hands typing is a challenge but if you are interested to see how I manage the psyche side of illness then I will be more than happy to type out what I do to maintain my happy disposition. Good luck, stay strong, georgie oz
  5. G'day annice, Yep I had dentures put in directly after they were extracted , and to this day I have no trouble at all with dentures as the gums when healing would mold in around the denture plate making a much snugger fit. I am one who can eat anything from apples to steaks and I think that is because my dentures are so so well fitted. I have never regretted doing it. It is worth it in the end but be warned it is a tough path for the first week but after that smooth sailing and the best thing no more dentists needed!!!! hugs georgieoz ps good luck
  6. G'day, re lap band surgery in order to lose weight, there is a new procedure on offer that is no where near as invasive as lap band surgery , and is reversible once you lose your weight. I think it is called 'balloon surgery' try searching the internet to see what comes up, but the crux of it is the doctors give you a light anesthetic and they insert a balloon into your tummy then inflate it , and that's it! When the desired weight is reached the balloon is deflated and removed. It is having very successful results in Australia, of course the inflated balloon in your tummy limits how much food you can intake same principle but nowhere near as invasive, so you might want to investigate this new procedure. Hugs, georgie oz
  7. Thankyou ladies , that link was indeed understandable and informative , from what I understand ya can get addisons disease from autoimmune problems, ugh hope this is not my next 'gift' from scleroderma!!!!! Where does this disease draw the line? Even though I have a few of the addisons symptoms (main one enlarged adrenal glands, hair loss, pigmented skin, weight loss)I think for now I might just 'stick my head in the sand and stay focused on getting my dialisis right,I do the peritoneal dialisis and I started to leak 2 weeks ago they think I am leaking from the fallopian tubes!!! Bizarre .....soldiering on though ....... thanks for that link at least now I am aware of it and aware of what to watch out for. hugs georgieoz
  8. g'day everyone , just wondering if anyone here can shed some light on my new situation ,I have systemic scleroderma and earlier this year I went into sclero renal crisis am now doing dialisis , the hospital recently did a CT scan and said my adrenal glands are quite enlarged (glands that sit on top of the kidneys) they said they would worry about that later as they were still busy trying to get my dialisis right .....so I wasn't too concerned until my g/friend told me that enlarged adrenal glands can be a sign of addisons disease which ya can get if ya have auto immune diseases like scleroderma/lupas etc , has anyone heard of this ? georgie oz
  9. g'day pam , I was diagnosed with systemic sclero about 3 years ago and I have been itchy for most of that time , my sclero nurse told me that itchy skin is all part of sclero and there was really nothing they could do about it apart from the obvious ,warm showers not hot and a cream to keep skin moist , so like everyone else I have just scratched until I bleed ,aweful I'd rather have pain than this itch !!!! then I went into sclero renal crisis and the itch got so bad it reduced me to tears ...but now with dialisis and the sclero flare settled for the first time in years I dont itch yay !!!! ahhhhh lovely so sympathise with ya ........ hugs pam
  10. miocean , when you had yiur renal crisis did you loose your taste ? I am 3 months into dialisis and still have not got my taste back , the doctors say it could still return so I am hopeful , how long before your taste came back ........... can't wait to have the simple pleasure of eating come back ....... hugs georgieoz
  11. jeanie , I think the main reason for no medications is that I am severly alergic to cortizone , everything they tried I reacted to , so ....... the rhumotoligists I see are specialised in scleroderma , they have said that my sclero is aggressive , when my bp was so high they tried everything to get it down , I was on 12 pills a day and yet my bp was still high in the end the specialests said they were running out of options but they had one more pill they could try and bingo that was the magic bullet my bp came down but not before my kidneys died ( I got 2% kidney function) .......... I just resigned myself to what will be will be meanwhile I am back to enjoying life , spring is just weeks away can't wait for that had enough of winter cold .lol in closing can I ask if anyone has any remedies for SEVERE itchy skin , it is driving me nuts can't sleep from the urgency of the itch !!!!!! hugs georgieoz
  12. hi again , miocean I do peritoneal dialysis , I do it from home 4 times a day 7 days a week , because my hands are so severely effected by scleroderma the specialists would not even attempt a fistula in my arms for hemo dialysis ,said it would put me at high risk for ulcers and gangrene , so if peritoneal dialisis fails I am in real trouble .... but as it is today the pd is working well , I have no real trouble with it but the sclero is still on the march and causing me daily hassles , I am not on a transplant list as it was suggested that I probably wouldnt be accepted as the scleroderma would just take it in the end anyways so I wouldn't qualify !!!!! perhaps I should re approach the subject next time I see the specialist ............ yeh that's the word I was looking for pulmonary hypertension !!! thats what they say I am at high risk in getting , they say the symptoms to watch for is a persistent dry cough and fatigue ...... they said not to worry about it just to get on with life as it may not happen , I am not receiving any treatment at all for scleroderma , the doctors says nothing they can do just 'wait and see' and they will treat the symptoms as they arise " so that is where I am at ................ hugs georgieoz
  13. Thank you ladies for your replies. I have to amend what I wrote though, my blood pressure was 255/110 not 155/110. I think the important message here is to be alert to different symptoms. I thought I had a virus; I didn't know about renal failure. I thought the vomiting would just run its course and all would be well again and furthermore the doctors had no clue either, they just treated me for high blood pressure. It was only because the blood pressure (bp) would not respond to medications that they decided to look into scleroderma ,but it was too late by the time my bp was controlled I lost my kidneys. My concern these days is my doctor told me that since I had scleroderma renal crisis (src), I am at high risk for pulmonary crisis (can't remember its right name ) so this scleroderma is pretty scary, ya just never know. Hugs, goorgieoz
  14. G'day everyone, my name is georgieoz , and I just joined your group and I wanted to share my experience with you in the hope that there are others here in the same place I am at. I have had diffuse sclero for about 3 years. I had all the typical symptoms but earlier this year I suddenly started to vomit continuously and had bad headaches and off all food, after day 4 I went to hospital my blood pressure was 155/110 (later correction, actually 255/110) still vomiting. I was in scleroderma hypertensive renal crisis, and sadly months later I now do dialysis because I have next to no kidney function left. I do dialysis 4 times a day 7 days a week. Because so little is known about scleroderma by our medical people I was just treated for high blood pressure -- it took weeks for them to work out I was in scleroderma renal crisis (SRC) but by then it was too late; my kidneys were gone ... is there anyone else here on dialysis due to SRC? hugs georgieoz
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