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luvbnmom3

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Everything posted by luvbnmom3

  1. Anticardiolipin antibodies (low positive)

    I had IgG & IgM antibodies, my doctor said that she thought possibly Antiphospholipid Syndrome, they base it on clinical criteria & 2 positive IgG or IgM antibody tests around 10 weeks apart (it seems every doctor varies on that though). Mine were positive both times. I have done a lot of research on them though & have read that sometimes they can bepositive in other autoimmune diseases such as Scleroderma & Lupus. I hope that helps!
  2. Acne

    I have these little bumps I keep getting on my forehead, etc. and I have them on my back too. It looks like acne, I think. This has been an issue for a while, not a sudden thing. But I never had acne or bump issues at all until the last probably 6 months (other than 1 pimple, once a month... maybe. ) So, anyone out there have increased acne issues as their skin was getting tight?
  3. My hand is shrinking

    Hi Jeannie, My (fired) doctor says it isn't sclero because of that! It is taut on the back of the hand, thick & tight on the bottom, tighter on bottom. My hand is worse than my fingers, too. Tell me what your rheumatologist says once you ask him! tootles!
  4. Hair Loss and Johns Hopkins appointment

    When my symptoms first began (Raynaud's, joint pain, heat & cold intolerance) my hair also started falling out like crazy. I don't know how much I lost, but I have continued to lose it but not as rapidly as when it started. Mine is pretty unilateral; there is some on the right (in the front anyway) but my entire left side is quite thinner & I dry that side 'upside down' so give it life to keep up with the right. The weirdest thing to me is that the hair loss is on the left side of my head and the majority of my symptoms from the scalp down are on the right. I mean, the left follows suit eventually, but the right is always ahead & worse. So yeah... lots of hair loss here & it was one of the first symptoms.
  5. My hand is shrinking

    That is an interesting idea to trace your hands & keep track! I haven't noticed mine being shorter (except when they look like sausages, then they look shorter) and my right is worse than the left as well - tighter. Mine are tighter on the palm side & thick. I have less range of motion in the right hand than the left so I am going to track that! I feel like I am shrinking from the inside out, except I look much heavier in the torso area.
  6. Mispronouncing or mispeaking your words

    This saying things wrong is a newer symptom for me, so new that at this point when I say something wrong (seems like I just don't pronounce things correctly, I throw in an "r" I think or something) anyway, right now when it happens, I don't miss a beat. I keep right on talking like it didn't happen (because I'm not sure where it came from, I'm thinking, that was weird ), only I am feeling embarrassed about it now because I'm starting to realize that it isn't a once in a while thing. Everyone mispronounces stuff once in while, but I am doing this often and it is bothersome because I've always been quick and had witty things to say, and fast. Now I go to say something funny or whatever and I mess it up because I slurred words into each other or because I mispronounced one. My kids think it is hilarious and will mock the word I say wrong. Gotta love 'em, they help me see the humor!
  7. Our Sweet Peanut

    Aww. I keep looking for her posts on here. Thanks for updating us!
  8. Where did your skin thickening start?

    The underside of my hands first, soles of my feet, & my lower back, but I feel like I'm getting thick & stiff from the inside out and my entire body is worse on the right, the left side always follows suit though. My face feels tightest around the hair line, I feel my skin pull tight on my neck when I turn my head & tight at the waist when I bend or turn at the side. The skin on my lower back feel thick & stiff, but under the top layer of skin & much more so on the right than the left, if I lay on my back in bed, I always have to adjust that side -- sounds weird I know. On the front side, I just feel like my skin is attached to the lowest ribs, so if I stretch my arms up or take a deep breath it pulls on my ribs. A few months ago I started noticing a loss of range of motion in my shoulders, just when I go to pull shades closed or when I am washing the kitchen table with big circles, and when I shave my pits (haha) I have to make a conscious effort to lift my arm as high as I can otherwise my armpit gets cut. It took a number of times of shaving to realize that was why I was suddenly getting cut every time. lol.
  9. Should I get my wedding ring enlarged?

    I thought what Mando said about doctors just looking to see if your skin is hard and tight...it's like they ignore the symptoms that come first. A radiologist said I had "CREST" AKA limited Scleroderma, but the rheumatologist said no. Anyways, if I do have it, it is fortunately insidious and my swelling has been present and worsening for well over a year now. Anyway, back to the rings (don't want to get too off subject) but you mentioned swelling for 5 months, I've read that the length of time varies, some are more insidious, some quick.
  10. Tight but not hard skin?

    Hello! So, I have a question, as scleroderma progresses, does the skin feel hard as it gets tight or what? I ask because my skin on my face is getting tight, I especially feel it around my eye and mouth and my right eye is harder to close. I have hyperpigmentation around the outside corners of both eyes and under my bottom lip. But, my skin isn't hard at all, it is just getting tighter and tighter! I am frustrated because I know my skin is getting tight, but it isn't hard, so does that mean it isn't scleroderma? Thank you for your help! I'm sorry I'm not around a ton, I am so busy with school I barely have time to use a kleenex instead of my sleeve. Just kidding! :) luvbnmom3
  11. Should I get my wedding ring enlarged?

    Ahhhh, the wedding ring dilemma! So... I didn't know anyone else struggled with this and I wish I had some advice to give you, but I can say I like the variety you've gotten so far. My wedding band was too big from the time I received it (12 years ago), but I always just put the engagement ring behind it so that it wouldn't fall off. When I was cold, I was always afraid I would lose them. FINALLY, after about 10 years of the band being too big, I decided to have it sized down & to have both rings soldered together. Much to my dismay, that was about the time that my hand swelling became more of a chronic issue, not just a morning issue, so unless my hands get really cold, they barely fit & I go back & forth between wearing them & taking them off....always trying to make sure I take them off before going to bed or else they are diggin' in, in the morning. So for me, I haven't gotten mine made bigger mostly because I have no idea if this swelling is here to stay or if it'll go away. I really, really, hate not having it on and because if my hands get cold enough, the rings feel like I'll lose them, I'm afraid to get them made smaller.
  12. Tight but not hard skin?

    Thank you for your input everyone! It is interesting to read, this all makes more sense to me now. My skin on my lower back is tough compared to just above my waist, like it too "fat" so I am always adjusting it; it is kind of weird. That was there before I gained 15 pounds. Anyway, what y'all describe sounds more like tough skin than hard -- maybe when tough is combined with taut it feels hard! lol. I think too hard! Welcome asksd!!! luvbnmom3
  13. Got my test results

    Hi! I was excited to scroll down & learn that you were taking the bull by the horns again! I know how it is when you feel like you've said everything you could say & nobody is listening & taking action...so then you feel like throwing in the towel. Good for you getting back up on your feet & taking them back on! I enjoyed reading others' comments to you, everyone here provides such wonderful support, from humor to encouragement! Hang in there, I'm anxious to hear how it goes today. Oh, something I thought I would mention. Rumor has it that when you see a doctor in one area, more often than not they are of the same beliefs as the other doctors in that same area - aware of the same things, at the same level (for the most part). That is why when getting a second opinion, you go as far away as you can...lol! Maybe not that far, but I hear stories all the time where it is always someone far away. One lady had a brain tumor & was told by 3 local doctors (all different offices) that it was inoperable, even if they did try to remove it, she was gaurenteed to lose her sense of smell & likely her vision. She did some research & found a surgeon, one state over, who has done this surgery a number of times with great success. She called & sure enough, they said, no problem! that was a few years ago & she sees great & can smell great! Hang tough!
  14. What do migraines mean?

    I suffer from migraines and know many others who do as well. To me, when they become a chronic issue, a good neurologist isn't a bad idea. If you google "anatomy of a migraine' there are several articles that discuss the stages of migraines: maybe you and your wife can pinpoint some of the things that happen before the headache shows up and eventually prevent it from getting out of control -- sometimes that works. Also, the headache is a symptom of a migraine, so there are many things that can go with the headache, and some lucky devils (such as myself) often get migraines without the headache! I completely know where you're coming from when you ask, "do people live with these". Migraine headaches are no fun! But yes, there are people who can't seem to get rid of them and simply are stuck dealing with them, but, I think there are lots of ways to help reduce the headaches and reduce the frequency. If your wife has no history of migraines, I'd say that warrants a trip to the doctor sooner than later to rule out other problems. I hope she gets to feeling better soon!
  15. Tight but not hard skin?

    Wow! Well that was all just fabulous information...hehehe! That does help. I have had such a rotten time with doctors. My skin has been getting tighter, I FEEL IT GETTING TIGHTER (not the process of tightening of course...but you know) but they "check" it and say that it isn't tight at all and that I probably had some swelling. I always have to take my wedding rings off before going to bed because my fingers are too swollen in the mornings. (THEREFORE I know the difference between tight from swelling and just plain old tight). My eyes have been rather swollen (around my eyes) for just as long as my fingers have been getting swollen and my eye lids are tight enough that rubbing them to get rid of something "in" my eye does no good AND sometimes I get soap in my eyes in the shower because I can't keep them closed tight enough. So, how about cottage cheese legs? I gained 15 pounds (10 of it in September) and my legs look like the fattest, cottage cheese legs ever. Not just my thighs, but my calves too. I'm within the normal range for my weight (high end of normal, but normal). And, kind of weird, I lost a lot of hair (more on one side than the other) and the hair on that side of my head is all tightly "leaning" down toward my ear, like a cowlic, but the whole side of my head! Anyway, my IgG's & IgM's have been high and I don't have what you describe as advanced stages of sclero so I think they're completely ignoring that possibility. I feel that if they looked into it "harder" and found out that it was (if it even is), there is a chance that they could start prescribing whatever (prednisone maybe) and at this early in the disease maybe really slow things down?? For now they say I have antiphospholipid syndrome. I do have the dilated and irregular nailfold capillaries and elevated RF too. I don't have a rheumatologist anymore. I ditched him because he didn't listen either
  16. Eosinophilic Fasciitis - White Blotches

    Hi Aaron, I'm sorry you are experiencing more symptoms to deal with. Everyone here is great though & if anyone has any ideas I know they'll chime in like ohboyoklahoma mentioned! I do not have EF, but as far as I know, it does cause the orange peel skin & it also can cause the vitiligo (loss of pigment) & can cause claw-like hands (I don't know if your hands are doing that, but maybe that is part of the pain & stiffening?) or maybe carpel-tunnel syndrome (also part of Eosinophilic Fascitis). Anyway, and I also read that eosinophilia "resolves promptly" after treatment with prednisone. I am not a doctor, but I am in school & I read a lot of medical journals. I looked to see if this information is on this website, it is. Once you get to the EF page, scroll down to the links under "Scleroderma & Eosinophilic Fascitis". It is the second link there says the same things. I hope this helps some, it sounds like you have a good primary care physician that cares, that's good! luvbnmom3
  17. Capillaroscopy

    My nailfolds are red, thick, jagged, and layered cuticles with brown dots in them... My old rheumatologist used oil and a magnifying glass... said they were irregular and dilated. New rheumatologist...I told him what old rheumatologist said, he tried to look at mine with a old, blurry, ruler looking thing that he pulled out of his pocket?? lol whatever! I sometimes can see them when they dilate more. I am taking an anatomy and physiology class, when we do the cardiovascular system, I am going to check my nailfolds out in the lab just for fun to see what they look like now.
  18. Stages of renal failure and GFR

    Hi! I have run into the same thing with numerous physicians (Rheum, Internal Med., GYN, etc. & none of them know what the Kidney foundation has to say about the eGFR. It does say that normally you would have to lose 50% of your kidney function before your creatinine & eGFR were to be abnormal. It also says that we only need one kidney to function well, if one is doing great & the other is not, your labs could all look just fine. doctors always say, well, it's within the normal range & so is your BUN so you're fine. SO... I can tell you how things have gone with me & maybe it will give you a little more info... it isn't much though...lol. My eGFR was 103.0 when I first started having all these health issues, that is PERFECT for me. Due to a variety of symptoms that kept coming, I ended up having a basic Chemistry panel done a number of times over a little more than a year. Each time, my eGFR was lower (& Creatinine higher) eventually landing at 69 eGFR! But when it was around 74, I decided to stop taking the NSAID I was on (even though rheumatologist said the steady drop wasn't a problem or related to the NSAID) it continued to drop down to 69. Six months after I stopped the NSAID my eGFR went back up to 89 but that is as high as it has gone. Healthy for my age is 103, 89 is still within a safe range, but a steady decline should have been a red flag to them....in my opinion.
  19. Raynaud's help

    Hi all! With winter here, Raynaud's is worse than the winter before (that's the way it goes each year). Anyways, my feet are staying numb for sooo lung, white & numb. I'm scared for them. Does anyone know if this is going to cause some problems or not? I can't get warm & I can't get rid of the attacks for so long. I'm frustrated. I take a calcium channel blocker & I take a baby aspirin a day for APS, I try to do everything to stay warm. I've always felt like a guru when it came to protecting my self from the cold... but it is beyond my control this winter I guess. By the way, my doctors are still saying APS is what I have & CREST, I can't recall if I mentioned that they finally figured out some of what has been going on the last few years. Thanks!
  20. Raynaud's help

    Hey thanks for the info! I am worried since, like it has been mentioned, winter isn't hardly even here! berrydahl - what is DU? I'm sorry...brain fuzz here...lol!
  21. Peanut

    I also was wondering. I hope she's getting better & better!
  22. Calcific tendonitis

    Hi Karen, How are your shoulders now? Did you hear back results yet? For the last couple of weeks mine have seemed like they wouldn't move passed a certain point, anything I'm doing with my arms extended, shulders feel stiff... always something! Anyway, I hope the MRI gives your doctor a clear pic of how to alleviate your symptoms!
  23. Someone believes me

    YESSSSS!!!! I can totally relate to your elation.....lol. I'm glad you're being listened to & checked out properly so that you can get proper care! Hang in there & keep us posted on how it goes with the rheumatologist & Gastro doctors!
  24. Hello everyone..

    Hi Sam! That is a great idea, contacting your state reps. I hope that they really hear you & take this as seriously as they should be. I'm really sorry you're dealing with so much, I can't decide which is worse; dealing with chronic pain or dealing with depression... they're both just so difficult. I hate to see anyone have to deal with it. Keep hanging around here & getting support and don't forget to take time to do things for you that make you feel good about you!
  25. Update on Lisa (Peanut) from Best Friend

    Hey Peanut! Everytime I get to get on here the first thing I look for is an update on you and I haven't been able to do that in a while. It's always great to come on & hear of how much progress you have been making. I admire your strength & courage through all of this! I'm bumbed for you with losing some of your lil' piggies, with all that I've heard about your strength, humor, and creativity, I have a feeling you aren't going to let that slow you down! Hang in there & know that we're always thinking of you! Sara, as always, thank you so much for taking the time to keep all of us here updated!!!
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