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Everything posted by isobelle44

  1. Hi Molley, I also have morphea and have the same symptoms you do. My doctors don't think its related either, but I haven't gotten an answer yet. My morphea started in may 07. I dont have an answer for you , my symptoms come and go, sometimes worse then others. I have alot of skin involvement, generalized morphea. I know I have a good doctor (scleroderma specialist)They dont seemed to concerned, maybe because I don't have raynauds or other more serious complications. I get worried sometimes that it is more then what it is, but till it manifests itself in other ways I try to remain calm but alert to symptoms I have read about here. At least you know what to watch for. In my mind, i do believe it is the morphea because I didn't have any of these things till that hit. But who knows. I know thats not much help, but I know exactly what your talking about. Sharon
  2. I have been diagnosed with generalized morphea. I used to be a smoker but quit 15 months ago. Well last night I was with some friends and they all smoke so dummy me bummed a cigarette. You would think after 15 months I would have been hacking away on that cigarette, but I didn't. It was like I never quit. Now I'm not going to start smoking again, that isn't my question. Have any of you experienced that? I'm wondering if my diagnosis is wrong and my lungs are fibrosing? My rheumatologist has never really tested my lungs.
  3. Thank you Jefa, Yes that is pretty much what I think about, how this is going to go and what to do in the future. Thank you for the suggestion and link, I started looking through those pages and wow there is a ton of information and encouragement there. I will continue to process through them. This site has been such a wealth of information and support. Im very thankful for it. Sharon
  4. I don't post that often but I read the board everyday. I have a question: I was diagnosed with generalized morphea and I have it most places, but on my face I have one spot about the size of a golf ball on my one cheek. My understanding of morphea from everything I have read is it is spots of collagen build up and that's what I have. But lately my face is feeling more of an all over tightness and my lips have been extremely dry. I used to have just tightness at my hairline but now it's all over feeling. Also my arms are feeling either really dry or tight, all over feeling, but yet they seem to be soft when you feel them, just weird things. Also I have noticed my ankles feeling the same weird stuff. I'm wondering if morphea does that or is this moving to a different area? I have also been diagnosis with IBS, hypothyroid, reflux, no Raynaud's though, yet. My fingers are just slightly swollen and I can see a spot on a couple of them where there is collagen build up but they don't seem to have changed much in the last year. My finger pads get those wrinkle lines down them and seem to be a little tender at times. But it is not something I would think would be a symptom of anything else. I don't have a rheumatologist appointment till September and my dermatologist appointment is in June, should I wait or not? I appreciate any comments. My nose has been feeling weird too, and its getting wrinkle lines up between the eyes area, and I feel like I have a stuffy nose or sinus problems all the time. When I mentioned some of these things to my rheumatologist about a month and a half ago she said everything looks normal and she felt my arm and said it was normal, not to worry. I don't need to be diagnosed with scleroderma, but if that is the way it's heading, I guess I want my doctors to acknowledge they know that's the way it's going so I know they are treating it the best it can be treated. And if that is the way its heading then I have a lot of decisions I need to make and changes. I'm a widow with a developmentally challenged adult child, (who is a great kid, and I feel so blessed to have him) but I would need to make some changes, big ones. Thanks, Sharon
  5. Dear Monica, I have generalized morphea and have had it since 2006 possibly longer. I have been through uva 1 treatments and am now on plaquinil. It seems we have our spots in about the same places, though mine also run down my arms and there are a few on my back. I didn't purchase that article you talked about but would love to know what is in it. The uva 1 treatments slowed or stopped the quick progression I was having and seemed to burn out the white centers of my spots as well as thinned them. Because of my many spots and them running together my skin is pretty tight in areas so my doctor is trying plaquinil to soften. It seems to be working between the uva thinning and the plaquinil softening but I havent been on it that long yet. it will be 9 months in June my next appt. My doctor said the spots won't go away. But I don't care so much about that anymore. Sharon
  6. Thank you Jeanie I will try that. I do have my local general practitioner looking after my ulcers. There not at pressure points but seem to be where moisture builds. Under the breast, at first I thought maybe it was some kind of yeast, but its not. I have an appt with her tomorrow to see if the last treatment she was trying worked. They might be alittle better. I really do trust her, she is very sharp, so far she is the one that has found all my ailments, including the morphea. I'll tell her about the other things and mention the sicca. Maybe thats what it is. But I sure will try those products you mentioned Jeanie, and I have started with the vaseline today. Thank you everyone, Sharon
  7. Thank you for your comments. I have been diagnosed with generalized morphea and lichen sclerosis body kind for almost 2 years. I have it all over. I just came back from an appointment at Mayo and all of a sudden I'm noticing several different things. Like the super dry lips, my gums are sore, my tongue burns some and my skin on my arms feels warm from the inside out. Not to touch it warm, just feels warm. I have developed an ulcer under a breast and one on my back side. They both ooze stuff and pulls. I have recently been diagnosis with hypothyroid, which my doctor said usually doesn't follow morphea, but she didn't say it is connected. I'm wondering if this is still morphea or am I moving on to something else. I know you all can't tell me for certain, and my next appointment at Mayo is in June. It's a long wait. I can't just make another appointment cause its a long commute and my job, i worry about missing so much work, in such uncertain times. I'm a widow and count on my paycheck only. Do you think waiting till June is OK?
  8. I was wondering if there is a connection to super dry lips and scleroderma? Why are they so dry and sticky like. Also I have started to get ulcers on my body, Anyone have that and if so what works to get rid of them. I have tried several creams but no luck so far. Thank you, Sharon
  9. Thank you Shelley for the links. They helped a lot.
  10. I'm sorry I didn't do a search before I posted this. Is there any connection to hypothyroid problems and localized scleroderma?
  11. I have been diagnosed with generalized morphea and at times feels it is something more. My diagnosis came through a biopsy and looking at the skin. I have heard it is hard to distinguish generalized morphea from diffused scleroderma. For those of you that may not know what morphea is, its basically localized scleroderma, Only suppose to be skin involvement though it could involve up to 2 other (as I have read) i think it says internal things. So far I have negative ana, ( but I havent been back to the doctor for 4 months, no raynauds yet but alot of issues with tenderness and finger tips feeling funny. Other things I have noticed is I used to have long strong fingernails but they have become brittle, and appear the part that is connected to the finger is getting smaller, which makes the whole nail smaller. My fingers are thicker in the morning and by noon they are thinned and darker color, and sort of a leathery look to the skin. When I stretch out my fingers like we did when we were kids making the turkey fingers to draw around the palm feels tight and pulls at my thumbs. The finger connections to the palms and top of hands is slightly swollen in those areas. . I have never really heard that morphea can do all these things, does this sound familiar to any of you and what kind of scleroderma do you have? Thanks for your help. Sharon
  12. Hi Celiasblues, I have those permanant lines your talking about on my fingertips as well. Annomonys4444 Both sides of my hands are swollen where the fingers meet the palm or top (opposite palm), I think as you describe yours, thats right where mine are to. I noticed it about a month ago and have since been watching others hands to see if it is normal. Some have it and others dont. But my worst hand is my left. I sure would like to know what your doctor says celia. I have an appt coming up myself but its a little ways off. Sharon
  13. I would also be interested in what your doctor says cause I have alot of the same things in my finger tips. I have been diagnosis with morphea for about 18 months, started plaquinil 4 months ago. My whole body just seems so dry. My morphea spots are super dry and very unbendaby uncomfortable and very large spots. But my hands and palms have alot of the same things that have been posted here and on the other post about palms, and actually the top of my hands have puffiness where the fingers meet the hands between the fingers. Not sure if anyone else has noticed that with your hands. Sharon
  14. Hi Whitney, your morphea sounds very much like mine. My spots are very symmetrical. Where ever I get one on one side I get it on the other side. I have them all over with my stomach and back full and sore from my pants rubbing them. Mine are called generalized and I have tried many treatments, different creams which I don't think did anything. I just finished uva1 treatments which seemed to help a lot in stopping inflammation and progression. The spots got very dark which they are now fading some. Unfortunately, it didn't put it in total remission so my doctor has me on plaquenil at the present time. She said it takes a full 6 months to get going so I'm going to give it a good try. I get really exhausted some times, not always but by the end of the week I can't wait for the weekend to come so I can sleep in or rest in the middle of the day. I work full time and take care of my family and home. I'm a single mom. I also have it on my face, not bad but I know its there and my face is feeling tight. I'm not sure what will be the next treatment for me if the plaquenil doesn't show progress, I'm thinking it may be methotrexate but not sure. Beedee will have to keep us updated on her progress. I am glad you found this board and I'm sure you will get some answers your looking for. If I can be any help just let me know. Sharon
  15. Your eye doctor appointment sounds just like my last appointment. The same thing, possible starting of glaucoma. and return every 6 months. I have cataracts and eye problems in my family as well but I have only had reading glasses in the past and my eyesight hasn't changed for a long time. My eyes are starting to feel dry to and I also have diabetes. So I'm not sure if it is diabetes or sclero related. I was curious, you said plaquinel leveled out you diabetes? I havent heard of that before. I started plaquenil almost 3 months ago, i will be going for my 1st check the end of October. How did the plaquinil help the diabetes? Sharon
  16. yes I have seen a rheumatologist a couple times. He doesn't think it is anything more then morphea but I sure feel like it could be, Thanks for letting me know it takes that long to get results from the plaquinil. I wondered, my doctor that gave me the prescription said it takes a long time, and I didn't ask how long. Ok I will be more patient.
  17. I was wondering, I have morphea for alittle over a year, So far no raynauds, my skin looks (from what I understand) looks like diffused scleroderma skin, i have been through uva treatments which helped alot in some areas, i have finished the treatments the beginning of june and waited 6 months to see if it continued to soften my skin, and it did some, my dermatologist put me on plaquinil to help it along that was 3 weeks ago. Since then I have noticed my skin seems tighter, my face seems tighter, and neck, abdomen, back, calves, also, my forarms feel slightly burny and my hands do to. Is this helping or not? I am not scheduled to see her till october but im not sure I should wait that long. Does it get worse before it gets better? I have seen so many people use plaquinil for so many different things. Has it helped you? Thanks Sharon
  18. Thank you all so much for the comments. I have been reading so much and the information on this site is incredible. Donna and Keonoan how did your skin problems start and how long have you had it? Its so hard to find someone who has morphea. Sharon
  19. I guess it sounds like I need to be tested again for ana or sl70, its been awhile. I see my local rheumatolotist this next month so its good timeing. Thank you both. sharon
  20. Thank you both for your comments, and Nea your english was fine. I have had a biopsy and bloodwork from my first rheumatologist that came out negative. Im curious Amanda, When you were diagnosed morphea, did you have little odd things that just didn't seem to mesh? Looking back at it. I know I dont have raynauds and that is a huge marker. I have another correspondent that has morphea and we email alot, but she doesn't have the stuff I do. When I tell my doctors about some of this stuff they really dont say anything. So I dont know what to think anymore. I always heard you have to be aggressive and catch things early. I would hate to just let time pass if its more then morphea you know what I mean.
  21. I always wonder how morphea is all related to scleroderma. I know it is called localized scleroderma, i know it is only skin involvement, But I wonder how else they are connected. Though there isnt suppose to be internal organ involvement, i seem to have several other kinda weird things that I have seen others discribe on these sites that have diffused or systemic. Like: i have had those little prickly heat things on my hands before morphea popped out, i thought I was allergic to the sun cause it happened everytime I went outside. After the morphea appeared I never had that again (so far) then recently I have had a couple little lumps on my back of hand. I had to have a medical procedure and they have been having a hard time lately drawing blood and putting in the iv, they blew 2 veins and the expert had to do it. I have started having problems with my eyes and have developed a syndrom that can lead to glaucoma, i have read about systemic having that. It seems my feet have lost padding, they hurt like crazy and im always looking for the new gel pad to try. Dry eyes so far no sjogrens but I have to use artificial tears. Some sore joints , legs mostly, sometimes wrist tightness in my neck seems my hair is thinning Diahrea, or constapated acid reflux, though not everyday, just more then I used to. I take antacid tablets and it helps. Little things like that. Im not saying its totally scleroderma related, it certainly could be other reasons, getting older,im 53, diabetic (type 2), i work hard and have more stress then I want. But not much I can do about that. I have a scleroderma specialist dermatologist and she has sent me once to the scleroderma specialist rheumatologist that talked to me but didn't do any testing. I have only had this for a year. I wonder if this is morphea or morphea with scleroderma overlap, i dont have raynauds, yet anyway. I read alot about all the forms of scleroderma and it seems I can relate to alot of different things. Its a very strange disease. Any comments would be greatly appreciated. sorry I forgot to add that I have had that burning, unbearable itchy skin (havent had that for a while now) also slightly puffy fingers. think thats all. Sharon
  22. I broke out with morphea after a very long stressful period in my life but one thing that always sticks out in my mind is my morphea actually popped out 3 weeks after starting chantix. Im not sure if that is coincidence either. Many people have really good luck with that med. but I stopped taking it right away thinking it was some alergic reaction. Sharon
  23. I have type 2 diabetes, diagnosed with that about 2.5 years ago and diagnosis"d with morphea a year ago. I always wonder if there is some connection since they are both auto immune.
  24. Hi Chrissy, I have a band of tight shiny itchy skin on my abdomen that other spots developed on my breasts, shoulders, forearms, some on my back, thighs and shins. I dont have raynauds and my ana was negative. My diagnosis is generalized morphea, i really can't say at this time that I have any internal involvement that is more then an annoyance so im not sure if it is a scleroderma symptom or just my body. I have had my skin involvement for a little over a year. I have wondered if mine was diffused, but every doctor I have gone to tells me its morphea. Even my scleroderma specialists (dermatologist and a rheumatolgoist). I hope this helps in some way. Sharon
  25. Hi onecoolmom1, thank you for responding to my post. I have been diagnosed with morphea, had it for a year and have always heard/read that diffused and morphea are often confused diagnosis. I do have a wonderful scleroderma specialist. The shiny skin between my cuticles and 1 knuckle is new, just started I dont have raynauds (yet). I dont know if morphea can cause the shiny skin. It doesn't look thick though yet and my cuticles seem to be ok so far. Its just kinda weird. I showed my doctor and she said we would watch it. So I guess thats all I can do for now. I have only had skin involvement for a year and so far my tests are coming back negative. But I do experience quite a bit of acid burping, and sore joints. I also have sharp pains in my stomach at times. Im not sure if its all related or not. Sharon
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