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Everything posted by MaryFanPhilly

  1. Hi Annie, You poor thing, I understand how you feel. I had the mother of all calcinoses on my finger. When the rheumatologist saw the xray, she actually gasped and grabbed the table. The pain was as you describe and believe me, the terror of having that finger bumped or injured far outweighed any temporary pain I might feel. In fact I had no fear at all of pain knowing that daily pain would be gone. I strongly, and I mean STRONGLY suggest you see a hand surgeon, and one who is familiar with this very rare and strange manifestation. Board certified only. Personally if you've been living with this pain day in and day out, you're understandably agitated about more pain. From someone who has been there, you can do this. Message me if you need support. Have it done with now but it is true, it may return. But the consequences of it getting much larger are even worse. Please take action early. Be well, Mary
  2. Hello Ladyfay... I have a terrible, painful, large calcinosis and understand what you are going through only too well. See if you can get a referral to a hand specialist, particularly one who is board certified. They can be debulked if they are still small, but that comes with its own risks too. See if they can help you while it's still early. Mine is too late for that unfortunately. I often sleep with gloves to keep my fingers warm, and I keep this particular finger way out of the way and don't do anything to harm it. It's my sincere wish that progress is made in this area, because unless you've had to deal with this particular issue, you can't imagine what it's like. I describe it to people as having an infected tooth, as good an analogy as any, since it hurts all the time, you can't use it, and it's a part of your body you use all the time. Good luck, and keep trying to find someone to help. The shoulder shrug is just not acceptable to me anymore. Mary
  3. Hi Gil, I agree totally with Shelley and the other posters.... I was diagnosed in 2005 and had such rapid progression it was scary. But, after a few years, the progression slowed and I feel like nothing will stop me now, I just won't allow or accept it. Of course I still do progress, but am on an even keel most of the time. My goal is to live long enough to tell people what I REALLY think! Maybe run a few over with my wheelchair.... Taking care of ourselves should be our first priority if we want to hang around. So I won't be cliff diving any time soon. Cheers to us for surviving and giving hope to all the souls who seek us for help. Carpe diem! Mary
  4. Please, Marsha, get the scope. The worst part for me is not getting my morning coffee, :blink: and of course none of us like needles. I don't mind the nap and the juice and cookies afterwards, tee hee. In the many I have had, no ill effects afterwards other than maybe a little sore throat. I had my first six years ago when I was first diagnosed, and was truly terrified when the Barrett's was positive. I was certain I was going to die. Soon. I'm still here obviously!! Now I go yearly, and give advice to the nurses, anesthesiologist and anyone else who will listen about scleroderma, since so many are unfamiliar with it. Nexium twice daily and being very, very careful of my diet have resulted in NO sign of Barrett's in several years. The increased risk will always be with me but so is the risk of stepping in front of a bus tomorrow. My gastro doctor, who is THE sclero gastro guy in town, in fact he has an article on this site, tells me the chances are VERY small that they will develop into cancer. It's a very slow moving thing anyhow so getting checked and 'watchful waiting' are the way to go. Don't ignore it or be afraid of it, it will just become a vicious cycle and drive you crazy, which will make you ignore it more, and only make you more afraid. Go to a knowledgeable and well connected gastro doctor, and he will lead you in the right direction. You may have to go on a lot of 'first dates' with doctors but don't just settle for someone, be strong in your conviction that you deserve the best. Ask lots of questions and if they seem unable or unwilllng to answer, or impatient, on to the next doctor. Warm hugs, and your support is HERE. We've all been through this nasty stuff and more. This is an ugly disease with a lot of ugly manifestations, and my own way of handling it is to try to be prepared for whatever comes at me next, although I have no idea what that will be. I don't sit around waiting for it, but when it shows up I'm ready for it. I take a deep breath and make a game plan for dealing with it. When I was first diagnosed I was terrified to meet other sclero patients, afraid of what I might see or hear.... now it's very comforting to know WE ARE NOT ALONE. Best of luck and keep us informed, please! Mary
  5. Thanks for the input and it's good to see everyone here! As usual my rheumatologist shrugs his shoulders and says it's all part of 'my' scleroderma. It's hard to swallow that kind of response, and there is ALWAYS someone who knows more and I'm determined to find that someone. Apparently if you catch them early on, they can remove them but they grow back, and because I have such poor circulation it's too risky. He has removed many but never saw one this large. I forgot to ask him if it can grow down into my palm because then I'd really be in trouble. My feeling is, I spend more time keeping the finger out of the way and protected, I wonder if it would be much of a hardship to do without it. Or would it be a relief? There's a local symposium this summer so I'll get some more information then. Surely they'll have a hand specialist.... on hand. Ha! I crack myself up! UCLA is something I've been considering Shelley, but it's a long way away (350 miles) - but eventually I'll make it there. Lots of love and thanks, Mary
  6. Hello Folks, It has been quite a long time since I posted, and am now living in California since the cold was too much for me to handle back east. You all have my hearty sympathy who've had to endure these past couple winters. Even here, I often need to wear gloves indoors. However since moving here, I've had a calcinosis which has grown, and grown, and grown on my right index finger to the point where it has nearly doubled in size in the last year. It is so large that my knuckle is not visible on xray. All you can see are what look like shards of glass or rock salt. The pain is so intense that the finger is completely useless. I cannot bend or straighten it. I can't type with it, flick a light switch, or even use it to help hold a cup, or a pen. I cannot use a knife and can hold a fork or spoon only with my other fingers, a tricky thing. If I accidentally tap it on something it can make me scream out loud.... stranger still, the first two joints are almost completely numb. How can something so numb be so painful? So, I saw a hand surgeon, with an excellent reputation, to see if it were possible to remove it. His feeling is, he can try, but chances are I will lose my finger. He said eventually the skin will split and it will ulcerate, and at that time it will need wound care, but I could see where he was going. When I asked him point blank how long I would keep my finger, he told me either when the wound was uncontrollable or I couldn't stand the pain any longer. My feeling is, this finger is useless anyhow, so I am considering having it amputated. I have seen sclero patients who've lost their fingers. Has anyone else had to make this terrible choice? My gut tells me this is an awful thing, but so is living with this pain day in and day out. Many regards to my fellow posters, Mary
  7. Hi Sweet, My rheumatologist said it comes right along with Sjogrens and is called sialiadensis or something like that. Not anything to be concerned about but it sure is annoying, it happens to me on a regular basis but then it goes on its merry way eventually. He said we can't do anything to stop it. She has my every sympathy... Mary in Cali Now
  8. I too have painful calcinosis... my rheumatologist is not thrilled with the idea of removing the most bothersome ones (I have two on my index finger) because he said the circulation isn't great to begin with, and besides (he said) they can often grow back. I didn't know that. It is disheartening... anyone would think it's not a big deal but having to live with them, we know better. I've been having trouble sitting for quite a while but never considered that it could be a calcinosis. Can you feel it on the base of your spine? I am rather a (ahem) cushy girl so I can't feel anything from the outside. Remember, we sometimes see pictures of the absolute worst case scenarios.... that won't be us!!!! Hugs, Mary
  9. Yep, this is a common problem alright, and so many different issues.... personally I struggle with almost everything I eat. Not only do I have problems actually eating because my mouth has shrunk and my jaw is so tight, but have had to learn what I can eat, when I can eat and how I have to eat. I won't even get into my digestive problems but they make life miserable. Chocolate and caffeine aren't a problem for me, but perhaps it's because I don't eat them much? I do have problems with processed foods, like canned soup. There must be some spice or perhaps a preservative that bothers me in particular. Any milk or ice cream is bothersome. So I've gotten used to soy milk and frozen soy, which aren't bad. I also must eat slowly and soft foods are more easily tolerated. More and more I find myself making a big pot of home made soup and eating it all week. Raw fruits and vegs also give me a fiber attack... unpleasant. Meats are difficult. I try to keep a lot of vegetable proteins in my diet like lentils and beans. I guess it's a trial and error deal with all of us. My issues are even more complicated because I am also diabetic. No doubt the food/digestive issues are some of the hardest to deal with.... try to find a good GI who can help! I also take a probiotic daily and it seems to help, along with the twice daily nexium. Any help is good help! Lots of luck, MaryFan
  10. Hi Summer. I too have livido reticularis... it sounded so awful that I made the rheumatologist write it down so I could research it. My legs are very red on the thighs, and very white below the knee, plus all the veins etc. Jeannie is right, so far as I know... the worst thing about it is that I can't wear shorts anymore :-( Circulation is one of those things we have to deal with on a small and large scale, so please take it seriously and keep a close eye. Be well, Mary
  11. No lie. It was called a Dilute Russell Viper Venom Time test. Apparently it has something to do with anticoagulants and tendency to thrombosis, or something like that... she said it was to 'find out why I had Raynaud's' as if I HAD NO IDEA WHY.....!!!! Now I can laugh about it but for real, if she got ahold of someone who had not yet been diagnosed or was newly diagnosed.... I shudder to think. Mary
  12. Hello Gang, I have two very large calcinosis on my right index finger, one on the tip and the other in the second joint. They've been there for ages and were just part of the sclero life, ho hum... but now they are getting so big that my finger is actually numb, and you can see the bulge from the largest one. The finger is red and warm too, which is concerning me A LOT. I'm wondering... I know that sometimes they break through and cause those horrible sores and even become gangrenous. Has anyone been sent to hand specialists to have them removed before that happens? Are they attached to the bone or do they just hang there in space? It's not a happy thing, I know, but I'll be seeing a new rheumatologist soon and wanted input from those who have walked down this road before me. Any advice is appreciated.. Hugs from Caifornia! Mary
  13. Greetings miocean and everyone, I too am going through a similar issue with severe anemia. In my case they are thinking it may be a slow bleed from the GI tract. Do you have gastic involvement? It seems (unfortunately) that you have everything else so I would imagine so. It may be GAVE or Watermelon Stomach, where the blood vessels that line the stomach sometimes bleed. If they haven't considered that as a possible cause you may want to ask... and are they recommending iron supplements? I've been on them for about 10 days and the change in my fatigue level, while not dramatic, is a whole lot better. There are so many issues, and so many possiblities of where different symptoms and compliations have come from, it's hard to know up from down.Good luck and we're all behind you! Love, MaryFan
  14. Hello Gang, Everyone brings up great points. I can't imagine how an ANA goes from positive to negative and back again, except that my former rheumatologist said it's a rare test and very dicey for a lab to do. I don't think it's our antibodies coming and going! My conclusion is that perhaps it varies not only from lab to lab but within the lab itself? Could that mean missed diagnoses for some of us? However as stated before, it's a SMALL part of the whole picture, and it takes a really good clinician to see it. I've decided this rheumatologist is not for me, she ran some crazy tests (snake viper thingy? what?!!) and is just too wackadoo for me. So the hunt goes on... and I will ask the next rheumatologist this very question. Have a warm day everybody. Mary
  15. Whew! Thanks, I knew you would come through, and Shelley, well, you truly wrote a very eloquent post that I would love to show the new cowboy. I did not think that an ANA could be 'undone' or that sclero could just disappear. She is, I think, simply trusting her own labs and not her eyes or instinct, let alone other doctors- or me. She probably thinks I went to a quack who did a hasty diagnosis-- trying to look at it from her point of view. I will return to her next month to see the new lab results and by then she will have had some records sent from my past doctors. If I am still not satisfied I have a recommendation from my rheumatologist in Philly to someone in San Francisco. They are two hours away and out of network but I won't keep messing around if I dont feel comfortable with the new one. Lizzie, I can imagine that your head is swimming, as well as yours, Avalanche.... I had considered myself one of the lucky ones to have found a solid diagnisis in a relatively short time- 8 months. But once I found the right doctor, like finding the right pair of shoes,it was all good. I did offer her to call my doctors in Philly. I almost asked her to do an internet search of his name and read some of his articles and research papers, but I thought that would be too over the top. I'll keep you posted, now I have to find a GI and Cardio. sighhhhh. Many hugs, Mary
  16. Hi Miocean, No, you aren't alone, not by a long shot I would think. I had a very severe Raynaud's attack which made me black out for a moment. I ended up admitted to the hosptial and the general consensus was that it was the vasospasm caused by my body going from warm, to very cold, to warm again. Raynaud's can affect the large blood vessels as well as the small ones. It isn't terribly common but it happens. Cold weather is a horrible thing for us to deal with, and I do not miss it at all now that I have moved west. Good luck and keep bundled up! Mary
  17. Hi Folks, I know you haven't seen me in a while. I did move from the east coast to the west, finally, and am getting settled. VERY glad to be away from the terrifically cold weather you are experiencing if you're in the east, you surely have my sympathies. Well I finally got myself hooked up with a rheumatologist and went to see her today. Unfortunately my records had not been sent so I had to fill her in on my past history. Here's the thing. I had blood work done, and an ANA was run and came back NEGATIVE. I've had a solid history since diagnsis 5 years ago with positive ANA, not to mention several doctors agreeing that all my symptoms can be nothing BUT sclero- not mixed connective, not RA, and certainly not in my head.... the new doctor is now looking for all kinds of other diagnoses other than sclero, and hinted that I may have been misdiagnosed because of a negative ANA. The skin hardening could be 'mimic' symptoms from diabetes, the Raynaud's may be from some kind of blood clot etc etc. When we got to talking about the GI symptoms, the GERD with Barrett's I told her that one of my first symptoms was difficulty swallowing... she said, first symptoms of what, the Barrett's? Don't you all think she should know better? My response was, well, I just don't trust your labs, I DO trust my doctors since they were all very involved in our sclero center back home, and I think you had better re-run all the labs before jumping to any hasty conclusions. Now I mistrust any labs that they ran. I can't say I have any particular trust in the new rheumatologist, either. I know that doctors gauge their patients by what they see with their own eyes, and not what the patient tells them. But COME ON! I put a call in to my old rheumatologist and asked them to please send along my last few blood tests including one that had an ANA on it.
  18. Thanks guys! It is a bit scary being 2840 miles away from the old neighborhood.... the internet and cell phones make it seem shorter. But I think the winters will make up for it. Anyone who wants to visit let me know! Luv, Mary in (yay!) Cali
  19. Hello Folks, Funny this issue should arise just now, in a timely fashion for me personally. Having diffuse sclero and terrible Raynaud's, not to mention diabetes and very poor circulation, my little family (my two grown sons and myself) decided it was time to move away from the east coast and brutal winters, to the milder climes of the Sacramento valley. Many of you who know me on this board are aware that it's been my dream for a while to move here. We arrived last Monday after having driven the entire way with two cats and a bird! The timing was right for us, and we have friends in the area as well as having visited many, many times. Every day since we arrived has been cool in the morning and evening, and warm during the day but not so hot that we've had to but the air on for more than an hour or so at a time. The winter months here are much milder than New Jersey, and feel more like April to me, which is chilly but do-able. My personal experience is that winter was just too miserable for me. I was not able to work because of arthritic pain made much worse with high humidity in both winter and summer and I felt like a virtual prisoner in the winter months, and summer not being much better since everywhere is air conditioned to the point of frost, especially restaurants and movie theaters. Two pairs of socks and a heated blanket all day -and sometimes a hoodie as well- every day is more than I want to deal with for the rest of my life. I am hoping that perhaps I can work once again, since the times I have been here, my arthritis is a walk in the park compared with New Jersey. Just being able to go out for bread and milk in January will be such a pleasure, and never having to scrape ice off my car is more bliss than I think I can stand. So Eddie, to answer your question, and speaking with my doctors about this, the consensus in my case was, moving to a warm/temperate climate will not prolong my life but will certainly make my life easier and more pleasant. Lack of humidity here is what I think makes the big difference, the dry heat feels just wonderful. My biggest hope is to be released from the prison of prednisone, but that will be a bit in the future. Can I still be MaryFanPhilly or must I become MaryFanCali?? only kidding. Good luck and I hope you find the right combination to help your wife.... I and many of us on the board surely empathize. My solution was kind of radical but it was the right thing for us, and besides, it gives the Easterners someplace nice to visit, . Mary in Cali
  20. Hello Westie, My particular brand of hyperpigmentation starts as salt and pepper changes on my skin along with itching, as each part of my body become affected. Then swelling, then tightening. But, mine is diffuse, other forms may have other manifestations, or as Shelley said, it may not be sclero at all. Be sure to tell your doctor and follow his advice! Good luck, Mary in Philly
  21. sclero face lifts! Went to a wedding with my 25 year old son... and they thought he was my date!!!! Made me laugh but he wasn't terribly happy about it! hehe! and don't forget the perma-tan too.
  22. Hey Folks, Here's something interesting. Scary, but interesting. A few years back I went to a science museum with my kids, and there was an infra-red camera there which was kind of amusing and fun to see the different color changes regarding thermal wavelengths from blue to orange to red and such. In other words, it shows warmer and cooler areas on the human body and surroundings. Like on the science channel stuff. Everyone was in line and all the other people had red (for warm) cores and cooler areas at the very edges of their bodies. Except mine. I was almost totally blue, the only red areas were my trunk and the middle of my face. Pretty much most of my extremities showed cooler. It was kind of shocking! There on the screen you could see the actual results of Raynaud's. Mind you, I was not having an attack, nor was I particularly chilled at the moment. It was just the poor circulation in my body. Freaky. Just thought I'd share that! Mary
  23. Hi Snowy, That's an interesting question and it will be interesting to hear everyone's answers. My guess is that no two responses will be the same, since no two of us seem to have exactly the same experience. Personally, my Raynaud's often depends on how cold it is... if I get very chilled, I turn blue, or even if I get very anxious or upset sometimes. Or a change in temperature, say, getting in and out of a warm shower. My toes also turn blue so I have to avoid sandals. Restaurants and movie theaters can be quite a nightmare because of air conditioning. Last summer I was in 100 degree weather and stepping out of a pool I turned blue, it took me quite a while to warm up even in that hot weather. The friend I was with has small children who were amazed and totally riveted by my color changes! I am not one of those people who had Raynaud's before having sclero, in fact I had none at all until months after other symptoms occurred which I understand is quite unusual. Strange, this disease is so unpredictable. I'll be watching to see what other people have to say! Good luck, Mary in Philly
  24. Jeannie's another Gordon fan! yay! Next time I go I'll ask if they'll share the recipe, but perhaps not! The sweet potato taste was very subtle but sooo delicious. I do hope they make it, they were a nice bunch of people and were working so hard. It's so interesting. I forgot to mention we got to spend some time talking to his sous chef Scott (he's the bald guy... I felt terrible, that's what everyone was saying : 'look, there's the bald guy!') I suppose he gets that a lot, lol Cheers! Mary
  25. LOL, glad to see more Gordon fans! We were there for the big 'reveal' and the food was very good. The place was called the Hot Potato, and they took the potato theme and ran with it, the decor was so cute, sweet potato plants on the tables, and they gave little kids potatos in jars to sprout themselves. Potatoes of all kinds were on the menu too, and they even had a really delicious sweet potato cheesecake. yum. The poor ladies (there were two sisters and a sister in law) who owned the place all looked like they'd been smacked in the heads with frying pans. They didn't know which way was up by the time we got there, they said it had been such a whirlwind with them filming there all week long. Our local news interviewed me, if you want to see the link you can PM me and I'll send it to you. It's only a few seconds and all I say is that I love Gordon and Kitchen Nightmares, how lame. What a hoot. They said he wasn't too bad but they were terrified of him! Anyhow it was fun, thanks for sharing in it with me. Mary
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