Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About marjimaybe

  • Rank
  1. Thanks, Shelly. I just hope it stays gone for a long while!
  2. Thank you Sheryl for your really kind reply. As you well know, I'm a little scared now, because these hand and joint problems are relatively new. My fingers are shiny and puffy, like little sausages and hard. Looking at them, they look like edema, and I just thought that I was really retaining a lot of water, but it is so hard now, I hadn't noticed. I looked at some of the pictures of the scleroderma hands and mine look like them, though not as bad as some, but the puffiness and changes are very similar. I went to Mayo through liver transplant and thankfully I don't need one, now at least, but I've made contact and can get a good diagnosis of my liver and the state its in, whether I have cirrhosis yet. The liver people sent me to the rheumatologist because of my vitiligo on all my joints and the hyper pigment and also to see if the liver was being caused by AI disease. I don't have a return visit to the rheumatologist, but have a good local one with an x-ray machine and he took an xray of my hands on the first visit two years ago, so I may go show him while it is bad. I'm working them and I can straighten one pinky which is good. Thanks for all the information and tips for what to do. Mayo isn't digging very deep, maybe because I'm medicare, but they may ramp it up after they all get together and talk, I don't know. I just hope I get a better diagnosis. The endocrine thing throws a real wrench in things because they make such a big deal about giving me steroids, even though I'm deficient! They say it will make it worse in the longrun, but won't put me on every other day and don't like giving me tapers. Are endo problems also a part of this? I have antibodies to like my whole endo system. Thanks for helping me and giving me such a kind email. I used to live in Lansing and Ann Arbor and almost bought a house near Brooklyn, it used to be an old funeral home, but we were afraid of what the dog might dig up.;) Now I'm in Georgia. Thanks again. Marji
  3. Hi-- My palms are always spotted red and white, very odd looking, but I don't get the blue hands of Raynaud's, though my son does. I don't know if this is due to edema to my hands, which I may have, they seem hard and puffy. My feet do get cold still and turn blue, along with the red and white. I have more blood and weight in the top of my body, I have liver disease. Maybe this is the cause. But my hands stopped getting cold when I started synthroid, though they are still red and white spotted, and I live in a tropical area, so it's not cold enough to get my hands cold. Does this mean my Raynaud's went away? Can you get it in your feet? Thanks for any help you can give.
  4. I have pitted ridges on my nails that then split on the ridges and the nail peels down which is very painful. I endup super gluing my nails together when they split on the ridges. My cuticles have become overgrown with the onset of my autoimmune disease and also painful. I get black "splinter" looking things in the nail at times and the cuticle is no longer rounded but goes way back in some places on my pinky and ring fingers, which are curved, and bleed easily. As a child, they were red and shiny and peeled and I used to chew the skin off them that peeled because it hurt when it got caught on something or rubbed the wrong way. I don't have that problem any more. Instead, my cuticle and nail are completely flat, dented in. The sides of my fingers are swollen and the corners of the nails get ingrown and hurt. The skin is too hard to cut out of the way and very sore if I do. I thought the changes were due to vitamins, but my mom, whose immune system is totally broken down and gone, has worse problems, but they started like mine.
  5. Yes, I have that on my feet and hands and use a cream that is the best. If you want to know the name of it please send me a private message and I'll share. It has a little menthol or something in it, very little, and is thick but heals cracks very fast. I think they are discontinuing the big tubes so you can often find it on sale at the drug store. I soak my hands and feet in epsom salts or foot salts and warm water then while wet put on a thick cream like bath and body thick stuff. It seems to help. My son prefers and oatmeal lotion.
  6. Hi- I'm new and have some questions about scleroderma. I'm currently diagnosed with secondary sjogrens and have bad scoliosis, always elevated ANA with speckled pattern, positive for anti-cardiolipin antibodies, vitiligo and hyperpigmentation, diabetes,removed salivary glands and lymph nodes in neck, lots of scarring, calcifying lymph nodes, inflamed lacrimal glands, stiff muscles, thick skin, polyendocrin dysfunction incl. hashis hypo, and Non alcoholic steatohepatitis, neck surgery for canal stenosis, spondylitis, degeneration, general joint problems, abnormal emgs, mild heart atrophy. I am going through the mayo thing and the rheumatologist is saying I have connective tissue disease, but he also noticed I can't straighten my pinkies. I thought the swollen feeling was from edema, but it is not, it is hard, like the underlying tissues have atrophied. My arm muscles are hard and painful as are my legs. I notice this is moving on to my ring fingers within a week. Funny thing is that as awful as I feel right now, my complements and ANA is relatively low at 1:40 and my sed rate and CRP are low for once. My platelets have been borderline low repeatedly though and maybe that is way, I don't know. My emgs have shown increased repetitive potentials-- the nerves keep telling the muscles to contract even though they are stiff. I'm still pretty flexible. I seem to have elements of rheumatoid arthritis, scleroderma type changes, muscular/nerve problems, and sjogrens so I don't know what will happen. They believe it is too early to tell what kind of disease I have yet. One factor is that I was mistakenly treated with alphainterferon--an immune system BOOSTER-- for my liver when I had autoimmune disease, this caused my autoimmune disease to be worse. I had a horrible time on it and lost my reproductive organs and it destroyed my endocrine system even worse than it ever was and it hurt my liver. 1. When I try to straighten the pinkies, and I can't all the way, my hand tremors back and forth from pinky to thumb and it is frightening. Is this something that is like scleroderma hand changes? Both hands are curling under and the ring fingers are doing it too and the middle fingers are going crooked I can't straighten them on one side and the other side is getting bad. No heat or pain, I didn't even notice they were that bad. 2. Do you have to pass all the blood work for scleroderma, or are there people who don't have all the antibodies but still may have it. I test negative for SSa SSb antidsDNA but always have elevated ana speckled. 3. The rheumatologist is looking at Rituxan for me. Would this make scleroderma worse? 4. Are pigment changes part of scleroderma? 5. I have been diagnosed with a lower esophageal ring and when my last submandibular salivary glands and lymph nodes were removed, the surgeon said there was an extraordinary amount of scar tissue and mentioned scleroderma. Can they make a mistake and misdiagnose the changes in the esophagus as a lower esophageal ring? 6. Should I seriously discuss scleroderma with my doctors and get tested? 7. Can the damage be prevented or will it run it's course regardless. 8. does scleroderma hurt the lymph nodes, liver, nerves, and muscles? Pain and heat in knees, one at a time, and shoulders and wrists one at a time. Stiffness in spine, can't stand up? Thanks for any help you can give me. I know no one here can diagnose me, I just wonder if others share some of my same symptoms and if I may be developing scleroderma or scleroderma type symptoms. I'm worried I'm going to end up in a wheel chair if they don't slow this down. I don't want to take the wrong meds or neglect something. My hands worry me because I type. Any help would be greatly appreciated. If anyone has pigment changes along with scleroderma, I would be interested, because the doctors at Mayo seemed to be well aware of my cluster of symptoms and about the pigment changes and how they occurred bilaterally in the joints, and seem to know about prognosis, though they seem to have no name for the condition. I would like to know if it is common with scleroderma. Also, my skin is thick and shiny on my shins and hands, putting in ivs is difficult. Thanks for any help and I wish you all the best. Marji
  • Create New...