judyt

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Everything posted by judyt

  1. Hi Kamlesh, I have a daughter who is Coeliac so I know the pitfalls of trying to maintain a Gluten Free dietary regime. However, she knows exactly what upsets her and does all the food preparation in her family so knows exactly what is in what. Her husband has to lash out into the forbidden foods when he is not at home but he is getting used to it. They live on what we in NZ call a Lifestyle Block, several hectares with their own animals so they raise their own meat from birth and know what they have been fed, a luxury not available to most of us. Prior to my diagnosis in 2002/3 I tried both gluten free and dairy free regimes and that made no difference at all so I have given that idea away since then and just stick to the things which slip down easily and nourish me as well as I am able to maintain. I would agree withyour son's opinion that reducing the amount of gluten would probably be helpful but in some cases it would mean having to cut out some foods which are nutritious for other reasons. A conundrum in my mind. Best wishes Judyt
  2. Well Jean, I can only reply with my own experience. I have Achalasia which is lack of peristalsis and other changes in the oesophagus but so far I don't seem to have any lung involvement. This has been the case for a number of years so I am not anticipating lung problems in the near future.
  3. I have experienced aspiration pneumonia and it aint much fun I can assure you. I was sure I was going to at least end up in long term care if I even survived!!! Judyt
  4. Hi Ashley, I live on the other side of the world from where you are, but in 1965 when I was 21 and on my OE to Europe and Britain, I started getting the sort of health issues you describe. In my case more Raynaud's Phenomenon and Gastric pain but nontheless very similar. Eventually as years went by I started having more internal problems but NO SKIN INVOLVEMENT that I was aware of. In 2002/3 I was finally diagnosed with CREST Syndrome which is now more commonly called Systemic Sclerosis. Do your arithmetic and you will see that I am now 73 and not ready to pass away. I have had a good life, albeit restricted by all the funny things which happened along the way. I was married for 51 years and 3 days when my husband passed away, and now I am loved and cared for by my children and grandchildren. Not a death sentence by any stretch of the imagination. The first thing to do is to get yourself to a Scleroderma Expert of which there are plenty in that part of the world, then make sure you calm down, learn to cope with what comes along and get as much good care as you can. Keep in touch with us here and trust this site to give you good information. Keep away from Dr. Google. Best wishes Judyt
  5. Hello Margaret, Reading your post I am tempted to think of the non-healing in terms of the problems some of us have with ulcers. An ulcer is really just an area which won't heal as I know to my eternal regret. Just at the moment I am faced with a large area on my shin which won't heal and is now infected. It seems to me, after talking to a wound nurse yesterday, that I should have spoken up a couple of years ago when this area was injured. Silly me just assumed it would eventually return itself to a normal state but it seems now that that has never and maybe will never happen. Oh well we live and (hopefully) learn!! Best wishes for some healing for Gareth :hug-bear: although maybe he doesn't need the bear hugs this time, but I sure do. Judyt
  6. Hi Dimarzio, As you no doubt expected you have received plenty of evidence from others of us that Ulcers are certainly associated with Scleroderma, although more often they are on digits and ankles due to lack of proper circulation. My bug bear has been ankles, I know I have compromised venous return which causes a build up of toxins in such places and so wear thigh high support stockingsevery single day and have done for getting on for 10 years now. Even when taking that much care the ulcers still erupt uninvited and then when there is an injury of some sort an ulcer is almost inevitable. Here in NZ we have Community Support services which are staffed by nurses who are expert at dealing with these pesky things but even so they can take as long as a year to heal. I injured my shin while in hospital 2 years ago and in the last few months the damaged area has decided to ulcerate. I am just starting to see the Ulcer Nurses and expect to become good friends with them :wink: . Take no notice of the general practitioner who knows nothing and trust the advice you get here. Best wishes Judyt
  7. Hi, Sorry to hear your news but thankful you have found us, if you stick around you will find endless help and support here. Rings, fingers I don't remember how many times I have had to have my rings resized. Not cheap either but I felt that I wanted to keep wearing them. One time I nearly lost them though - just a wee warning - I had got very cold out on the water in our little boat (my husband loved his boat) and when I came in to a camping ground I just scooted into the hot showers. Lovely hot water!! but what I didn't notice was that my fingers had shrivelled in the extreme cold and my rings flew off and landed in the drain, so close to going down into the never never. I still get the shivers when I think of it. Thousands of dollars literally down the drain it could have been. Stick around we will be your friends and do our best to give you sensible advice and comfort. Best wishes Judyt
  8. Dimarzio, I had the same thought as Amanda regarding your wife. Amanda has the small advantage of having a husband who has some knowledge and may I say skill in the field of Counselling but sometimes even I can some up with similar thoughts!! My children, now that they are adults, are the only ones who have ever confessed that they think I sometimes have good ideas in this area!! but they have to because of who I am to them. The rest of the world continues to think I am a fruit loop who simply doesn't try hard enough. I remember back in 2005 when my late husband was first diagnosed with a cancer. I was immediately fearful that we would have very little time left together but I was wrong and we actually had until a couple of months ago. Sometimes our worst fears are unfounded. The second thing that caught my attention was your comment about the feeling you get in your legs. I had the same for many years. Trying to explain how it feels to a Doctor ,or anybody really, just confirms in their mind that we live in cloud cuckoo land. In this case however, I have found that problem has, in the last year or so, resolved itself completely and I have not felt as though my legs belonged to somebody else for a very long time now. A relief I have to say. I believe you if that is any consolation. Best wishes Judyt
  9. Hi dimarzio, I note from another note you have posted that you think your symptoms sharted when you were a child. I have the same memories. I was frequently very sick and I know now from my Echo's that I had Rheumatic Fever as a child which was unrecognised. The Rheumatic Fever left me with a damaged Mitral Valve which was picked up in 2003 when I was 59. At that time I had some irregular heart beats and some Pulmonary Hypertension along with a couple of Murmurs, one of which I still have apparently. Anyway I have acute memories of the aftermath of one of my illnesses (flu like) leaving me feeling quite definitely that I could no longer run as I had been able to before. We all know that kids run everywhere and nowhere more seriously than in the school playground as part of our games. All of a sudden I couldn't keep up and I was probably only 10. The next memory I have is of an episode of severe stomach pain which called for a Barium Meal (as it was called then) but I don't remember there being any particular diagnosis after that. What I do know is that I get that same pain now, which tells me that way back then was when things were happening in my gut. So this ramble is sort of in response to your question about PH being noticeable in Echocardiogram. I believe so. After several years the decision was made that the PH was increasing, I had a Right Heart Catheter test in conjunction with a Balloon Valvoplasty, then 5 years later a Mitral Valve replacement. Apparently my mitral valve was like a stone. Now I am fine Heart wise, no Ectopic Beats, no AF so I am a happy camper. Being relieved of the fear of PH from the Sclero has gone a long way to help me feel happier. I have to say, though, that if I hadn't started getting all the complications with my gut that I would have continued being regarded as a Fruit Loop because I have absolutely no visible skin or joint involvement. I had a friend staying this week and she started in with the "maybe if you tried to exercise more and walk further you would gradually get fitter" refrain. There's nothing to see so nothing exists. I am totally incontinent but do I invite folks to examine my underwear after I have been for a short walk!!!!!!!!!! No no no!! but that doesn't mean nothing happens. Take Care Kia Kaha (be strong) Judyt
  10. Hi Dimarzio, We do understand to a certain extent what is happening at your house. It is hard when one has no particular obvious involvement and you just feel awful with nothing outward to show for it. For years I was in your position but with no diagnosis either I was the one who thought I was a sandwich short of a picnic. I wasn't really until things started happening that suddenly there was evidence that something untoward was going on. My first real symptom after the Raynaud's Phenomenon was sudden and unexpected vomiting of blood. I felt like a volcano was going off in my stomach for a few hours then woops up came blood. In ED following that I got a diagnosis of yes of course you have CREST and all of a sudden those who should have known better much earlier started acting helpfully. In my case, since they discovered I have no Peristalsis things in the information and compassion stakes have improved. Now my major problem is the propensity to vomit suddenly and unexpectedly. Not everybody does that and not everybody bleeds internally, but I do. I take Domperidone regularly and have done for years and I am convinced it helps but as time goes by even that doesn't keep things under control all the time. Vomiting whole blood suddenly and without warning concentrates the mind of spectators and more than once has resulted in a trip to the ED in an ambulance with all bells and whistles going and a reception committee waiting in Resus for me. I am sorry to have to imply that somebody in your immediate family may just have to wait to find out what can be going on, and I trust that at that stage it won't be put down to imagination. Best wishes, Judyt
  11. Dimarzio Have you tried asking her to read some of these posts? Have you suggested to her that she do the unforgiveable and simply Google Scleroderma? Surely reading some of that stuff would give her some idea of how it can be. Judyt
  12. Out of interest only because I am no expert. There was/is a young lady here in NZ with Diffuse who a few years ago was so badly affected by her skin thickening that her skin would split when she moved. Then the splits would ulcerate and she was in a very sorry state. As I have told you before we are not well served in this country with Scleroderma Experts and the Rheumatologist who was assigned to this young lady in hospital was at her wits end to know what she could do to help. From what I remember she also had lung involvement so on the face of it not a hopeful picture. In comes big sister who lives in Australia, not content to see her sibling declining at such a young age, she set about to find somebody in Australia who could offer some hope. She was successful and despite all the negativity expressed and the difficulty getting the patient to the correct city in Australia a Stem Cell Transplant was attempted and a seemingly miraculous 'cure' was effected. If you care to look up "Giving Kirstin a better quality of life" you will find the story. So all this stuff about having to be 'well' enough etc. etc. is not necessarily the only hope. Best wishes to everybody who is feeling down today. Judyt
  13. Dimarzio, Sounds just like the responses I have been getting most of my life. You did miss the best one though - "you could try harder. There is no reason why you can't start to achieve more". Unlike those of you who live in other countries I have no recourse to an Expert. There are none here and not one of the Rheumatologists I have been assigned to has any real idea what they are talking about. Judyt
  14. Hi Soul dancer, Like Jo I am here almost every day so I do see everything, no worries there. You ask how do I know the prolapse was caused by Scleroderma. Well in some ways I guess I don't really but when the Surgeon outlined to me the usual causes of a prolapse I didn't seem to qualify for any of them. I have never been pregnant and I am not overweight and just plain bad luck didn't ring true to me really, particularly once I joined this forum and read other stories. Since my diagnosis no doctor has said to me that the prolapse was NOT a Sclero thing. And yes I too wonder if more such things will happen to me. You say your experience was unusual. The Surgeon I consulted seemed to think it was not unusual at all for all sorts of people to have the same thing happen. Because I have no really obvious external changes and everything that goes wrong seems to be internal it is just natural to put it all down to the fibrosis and atrophy of internal tissues and muscles. Best wishes Judyt
  15. Hi Dimarzio, I have what has been labelled as Limited and as far as I am concerned I have no skin involvement . However the one and only Scleroderma Expert in this country, when he agreed to see me, said that I had some involvement in the tips of my fingers. I do however have extensive involvement internally. The first thing I was aware of 30 years ago was a total prolapse of my rectum. That was repaired a number of years later but there was no diagnosis of why it happened. A few years after that I had trouble swallowing, my food seemed to be getting stuck somewhere between my breasts and took a while to go down. That invited an Oesophageal stretch but still no diagnosis. In 2003 I had my first Haemetemesis (vomiting blood) and that emergency room admission ended with a definite diagnosis of Limited Scleroderma. A relief really to at last have a reason for al these weird things that happened. Now that I had a diagnosis I started having regular hospital checks and very soon after my first Gastroscopy I was told there is no Peristalsis in my stomach as far as the Duodenum. Colonoscopies and an MRI confirmed that my bowel is atrophied, meaning no muscle tone and so leaving me totally Faecally incontinent. In the past few years my biggest problems (having learned to manage the incontinence) have been internal bleeding and increased disability to swallow food. I was diagnosed after a specialised CT scan, with Achalasia. If you look that up you will see that the Oesophagus is distended and floppy with a tight spincter at the stomach. I can swallow well enough actually but then, unless my food is almost liquid, it just hangs around in my Oesophagus for hours. I have had a bad time this week by trying to eat what I fancied for a couple of days. I had a steak and salad on Monday, savoury mince and mashed potato on Tuesday and followed that up by an omelette with ham cheese and tomato. By that time I was seriously uncomfortable and later on Tuesday vomited the whole lot. Undeterred I continued on Wednesday until I had to accept about 2am on Thursday morning that I was doing the wrong thing :wink:. Since then I have been back on soups and smoothies for most of my meals. I hate soup but smoothies, icecream and jelly and that sort of thing is OK. I will just have to take myself in hand and learn to love soups. I have told you all this because you say you have Limited, no skin involvement but internal involvement. I think you are probably younger than me, I am 73 and have had some problems since I was a pre-teen. Way back then I had some severe stomach pain which was followed up with a barium swallow which in the 1950's was said to show nothing untoward. I still have that same pain now most days, not all the time but in waves which can be settled with a fairly simple anti-colic medication which I take when the pain gets too much. So, in my humble opinion, it is not a foregone conclusion that you WILL develop skin involvement at all. What I am wondering now is whether I will get to the point where I can't manage any normal food at all. It does happen to some of us and I assume there is no knowing what is likely to occur. I am at the disadvantage of living in a country where there is only one doctor. who is very experienced with Scleroderma, he is getting older and becoming fussy about who he has time to see. He has limited himself to those who are lucky enough to live within his own geographical area which counts me out. I have a very good general practitioner who I have an appointment to see in 10 days time but was unable to connect with this week when I needed her because she is on leave. It is high summer here now so definitely holiday time for all those who can schedule it in. Best of luck to you, hoping things don't get to bad for you. Judyt
  16. Hi Dimarzio and Soul dancer, Yes I agree, a result with Centromere pattern and negative SCL70 is what I have and my disease is labelled Limited.
  17. Hello to you, The short answer to your query is Yes. We have had people here who have tested positive for Scleroderma and never have developed any symptoms and conversely others who have severe symptoms and have negative ANA results. So there is every chance that being without symptoms now you might never develop any. Best wishes and good fortune to you. Judyt
  18. Hi Margaret, What a dilemma!! I know Shelley is very good at putting a positive spin on things, and just as well really!! but don't I remember you saying Gareth is living in a group home? How does the caterer/chef/cook deal with this sort of thing. Imagine having more than one resident on a special regime, Yikes! My heart goes out to you, I had two children growing up in our family and both of them had health issues which called for special care preparing meals and snacks, but nothing of this magnitude. Best wishes, hoping for things to work out well for Gareth. Judyt
  19. Congratulations Margaret, that is what we are here for to inform and support. It is great that you have stayed with us all these years and are still getting help and comfort. It must be so hard seeing your loved son suffering. Best wishes Judyt
  20. Hi Mando, You say your Echo has identified a septal defect. I don't know much about these things but I always thought a septal defect (hole in the heart) was more or less there from birth, maybe not. Anyway quite early on in my Sclero diagnosed journey an Echo identified a Mitral Valve Stenosis which I was assured was a result of childhood Rheumatic Fever. As the years went by my fatigue and breathlessness increased and poor lung function was ruled out in favour of the effects of the Mitral Valve incompetence. Had minor surgery to try to relieve it in 2010 but then in 2015 it was decided to do open heart surgery and deal with the valve properly. Of course that episode was not the simple 4 day event that is expected for most people. I managed to contract aspirated pneumonia, probably when they had me flat on my back in ICU the first day, and I ended up being there in hospital nearly 3 weeks. However in spite of that set back I am hugely better than I was and am thankful I got the opportunity to have that surgery. You may find a similar path appears for you and from my experience I would suggest that it could make all the difference to you. Best wishes Judyt
  21. Hi Margaret, I think I do have malabsorption problems due to my Systemic Sclerosis. I am very anaemic but that can in a way be explained by intermittent bleeding in the small bowel. Telengiectasiacan appear there as little groups of blood vessels which do start to bleed. Others talk about being deficient in various minerals and vitamins but testing for those seems to be very expensive and I have never really felt the need to be that pedantic about things. I have Systemic Sclero, I know that from the physical effects I have to put up with and other than that I just try to do my best. It must be very hard to try to guess what is happening with Gareth, I have had times when I have lost weight unintentionally but I think that is probably more due to stress and gut discomfort dissuading me from eating enough than anything else. Not really much help really, just wanted to say yes I do understand. Judyt
  22. Sierra, Thank you for that information, I had never thought of researching the names in that way and it does clarify things very nicely. I have got over being upset about the Alcohol inferences, but now I have to teach myself to use the word Cholangiitis in place of Cirrhosis!! Judyt
  23. Hi Sierra, You are by no means alone with your plethora of AI problems. I have had deranged liver function for many years and finally in 2012 it was diagnosed as PBC Primary Biliary Cirrhosis. Since then I have been on Urso and have little or no obvious disease. Since then the name for PBC has been changed (by whom exactly I don't really know) to PSC because it has been said that the word Cirrhosis is too stigmatising for those of use with AI disease rather than Alcohol induced disease. Who knows, as far as I can see PBC and PSC are different things but since I am not a Doctor who am I to say. Anyway you are certainly not alone with all these things plaguing us. I really do not notice anything in particular which affects me more than it did before, I have reflux, gastritis and bowel incontinence just like so many others do. Fortunately I don't notice any particular itch which is common with PBC/PSC. Fatigue is a problem and as well I have blood loss anaemia because of the damage to my bowel. Apparently Telangiectasia can form in the organs and bleed which has happend for me. Kia Kaha - Be Strong Best wishes Judyt
  24. Hi, The only case I know about was a young lady in her twenties (I think - quite young anyway) whose skin was so badly affected that it split if she moved. She was virtually full-time in hospital here in NZ and told there was nothing that could be done to ease her problems. Her sister who lives in Australia got herself on the job and found a Doctor in Australia who was willing to try a stem cell transplant. It was hugely expensive, considering the need to move her to another country, but they funded it through the on-line donation sites and a special fund that is available here to be applied to for extreme cases. The outcome has been miraculous, you would not know she had been so ill. The disease was so extreme in this case that the recovery has seemed to be extreme as well. I personally haven't heard of anybody else who was so much in need of treatment. I have thought about this and wondered if I had been diagnosed earlier, would I have benefited from such intervention. As I have grown older my disease has settled somewhat although the internal effects are still worrying but when I am on top of things I am better than I have been for years. Who knows what is the best route to follow. Best wishes Judyt
  25. Hi Kamlesh, Can't say really that my experience with the SNS was particularly helpful. It never did work but the surgeon who treated me was determined to try. Later on, a year or two on actually, he admitted that he wanted to do trial and actually implanted 3 Sclero ladies. None of them worked which didn't surprise me, but I have heard from some people that they did find their implant worked. I wonder if your doctor. really expected you to try all of those meds at once!!! Ouch! Immodium by itself is more than enough for me. At least the Metamusil I take doesn't cause side effects like that. It slows things down quite consideraby for me and that's just fine. Best of luck if you decide to do an SNS trial. Judyt