luvbnmom3

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Everything posted by luvbnmom3

  1. Popcorn, nuts, grainy breads, & saliva if I've had anything dairy. Those are the things that I seem to have a hard time getting down. I could eat some cereal for breakfast & 2 hours later, I'm eating something else & drinking in an attempt to get it down! It is indeed frustrating.
  2. Last year I noticed, like you said, a change in the swallowing...it wasn't really a problem. For me I noticed that whenever I brushed my teeth, I kept having to spit & spit & spit because it seemed to produce saliva or something & I couldn't swallow it down & keep it down. Then later it became more that I needed some liquids sometimes with dry foods, then I noticed specific things ALWAYS were a problem, like any kind of nuts or grainy foods, pieces are ALWAYS stuck. Right now it seems to be more of a lack of moisture thing for me because my mouth is so dry, I can't even eat 1 bite of a tiny pretzel stick without needing water to finish chewing it. I'd say definetly mention it....seems allot of stuff starts off where we notice a change that's simply something different but not nessarily a problem. My primary care physician said I had GERD & that you can have that acid thing going on & not know it... as westcoast1 mentioned.
  3. I think Lisa's comment about being diagnosed quick sums it up good. Her refering to being diagnosed with-in a year of a Raynaud's diagnosis as being lucky & quick goes to show how incredibly long it can take! My misdiagnosis at this point was Raynaud's (not having it) The immunologist my primary care physician sent me to even though I asked for a rheumatologist (research I'd done said so) anyways, Immuno guy said, definetly not raynaud's, blood is pooling in my hands too long, don't worry about it & maybe if I'm so cold I should move to a warmer climate & the blue fingers is just my new normal." Then my primary care physician sent me to a Cardio who said my fingers were clubbing & also witnessed the Raynaud's (& diagnosed it) sent me to a rheumatologist who confirmed the Raynaud's. He also said possible occult connective tissue disease & nailfold capillaries are irregular with minimal dilataion. I haven't been to the rheumatologist in a long while but with the swollen fingers (look like sausages almost) & feet I've had in the mornings (at least mornings) & the skin getting tighter & tighter on my hands, I feel it by my eyes (especially in the morning when I rub my eyes, skin doesn't move much) & my face when I yawn & the skin on my lower back when I bend over. Swallowing problems, dry mouth & sore throat, drinking water like it's going out of style, dry eyes, etc. Anyways.... I don't think a diagnosis is too far off... in the mean time, I just do what I can that I have read is proactive in slowing things down. ANA was negative back then too but I don't think I will let him run another, if that's possible, so a diagnosis isn't forced onto my records.
  4. Hi ladies, I have a few questions for anyone.... I have Raynaud's, have a had a nailfold capillariscopy done that showed minimal dilitation & irregular capillaries, don't know exactly if that is relative to sclero or not but new things are constantly showing up it seems & I've got new questions & concerns: Kidney function.... anyone keep track of your labs & know what it means when your eGFR (taken from creatinine result) drops 24 mL in 10 months? Mine went from 103mL to 79mL. Everything else looked ok except my BUN which was below normal. I've read that when the eGFR is where mine is at that it's seen in second stage of kidney disease. I lost my tolerance for medium rare steak & prime rib (can't hack the flavor, used to love it) I've had edema & swelling since last spring. A couple weeks ago I noticed tiny red dots under the skin on the end of my toes, in clusters & scattered. They look like pin ***** size blood under the skin. No trauma to feet, same kind of shoes worn for almost a year now....platelets are good. My right eye gets really dry really easy all the time & sometimes it'll get red veiney look in the corners. I notice that as the day progresses (in the morning eye lids are puffy, face is puffy, that eye often starts to look like it's sticking out or like the eyelid is retracting on the bottom. The eye feels weird. Mornings my hands & feet are puffy. my skin on the back of my hands gets really tight often & it looks like webbing between my knuckles on my hand & I can feel the skin pulling over my wrist bone. When I get out of the tub, as the water leaves my skin, I can feel my skin pulling on my back when I bend over to dry my feet. My knuckles on my fingers & hands sometimes look like they're bruised. My nailfolds are always red & puffy. Any of this sound familiar to anyone? There's so much I'm leaving out I'm sure...lol. All my labs have been ANA negative, Sjogren's negative, Sclero negative, etc. Just a high RF, but barely high. Thank you for reading this if you made it to the end! Thanks for trying if you didn't....lol
  5. Hi there, I haven't posted a while, I go back & forth between wondering if I have or am getting sclero....so when new things happen I keep coming here with questions...hope that is ok. Anywho, as far as fibro, I take Relafen (which I've read nsaids don't work on fibromyalgia pain....so either I don't have fibro or the pain is because of other stuff). I also take Verapamil for migrains...but the neuro said they are migrains that don't have a headache as a symptom. He said he'll slowly increase the dose & that it may help with the Raynaud's eventually.
  6. Hi all, I was wondering if any of you recall early symptoms of skin tightening on your hands? I have Raynaud's & a nailfold capilaroscopy with enlarged & irregular capilaries....low/positive RF, clubbing, & nothing else positive really. What's been happening is I notice that after I wash my hands & dry them on a towel, that with in a minute or whatever, when the remaing moisture leaves, all the skin on the underside of my hand (including fingers) is SO tight & shiny that I don't even have my normal range of motion & you can see skin being pulled from the bottom side of my wrist, like it's being pulled into the palm of my hand. The tigntening I haven't really experienced before there, but I do get it over my knuckles when I'm at the computer, my skin looks like webbing from knuckle to knuckle. New to me this winter, as far as raynaud's goes, is the horrible burning pain in my skin on the fingers that go numb the fastest. It's like holding onto a hot pan in the oven....I didn't have that last year when the Raynaud's first showed up. Any of this familiar to anyone? Thanks for your time!
  7. Hi, I keep trying to pop in once in a while, I can't be here as much as I'd like because I try to keep my mind off as much of it as I can but it was me elohos using the balloon description. I was skimming through posts and saw the tendon one and had to read through. I hate them. Mine don't always hurt, they're just very uncomfortable. I feel it in my fingers, both shoulders, and I think it may be what I feel near my sternum but I don't know. My rheumatologist says it's fibromyalgia and that I'm oversensitive and that it really isn't a friction rub, even though my husband can feel it if he puts his hand where it's at (knees too).
  8. Thanks for explaining the difference....although, it just occured to me, that since in the last year I've become an internet research guru, I 'spose I could've just looked that one up.....lol!
  9. I haven't experienced cracking skin on my fingers really. They get little slice in them often from adjacent finger nails....so I guess maybe that means they get cut easier than before (since all my life I haven't had adjacent nails slicing skin on fingers). I hope you can find relief for it, sounds like you got some good reccomendations here.
  10. My old primary care physician (Primarr care physician) prescribed Prilosec as well & I didn't take it after the first time because thought it was rediculous as well, since I hardly ever notice any acid but I always have food stuck in my throat....also, I don't know if you've had this as well, but when I eat things that are strong flavored (like peppermint gum or really hot spicey cheese...both produce saliva or phlehgm) but that when I eat them, the go up my nose some & burn. Anyways, maybe I will give prilosec a try.....& the gum & tea. kiwimum - you say the end of your nose looks different but you don't know if that's important (relevant, etc)....I have noticed that when I put lip stick on lately that my lip look like they're crooked now, like the right side is lower than the left....I hear ya on little changes.
  11. Yeah, I'm with you on the lack of dianosis thing. My podiatrist worded it well in his recommendation to send me to a large medical clinic, he said that a proper diagnosis has eluded all of the specialists I have seen here & that a visit to a large medical facility, like UofM or Mayo, & a fresh perspective is what he reccommends. Anyways...so yeah, only I haven't had cancer but most of my symptoms, when I research them all lead me to websites on scleroderma. The only other thing, last night I was researching swollen calves & feet & kept getting tuburculosis (sp) links....which I doubt...lol. I like what Sweet had to say about worrying what is related to what.....although I think to some extent, for me, it will be easier said than done!
  12. I posted a bit back about my skin pulling tight & whether or not it was shrinking & I think I have figured it out! I haven't been diagnosed with Sclero, but ever since last fall (starting with Raynaud's) I have kept track of all the changes & time & time again the symptoms always lead me to slcero websites (when I research them. Anyways, with my hands....I know with sclero the skin tightens & I was trying to figure out why my skin was having phases or moments of being really tight, like you can see it pulling taught (like webbing between my knuckles & lines gone on top of finger knuckles) & it is usually when I'm really cold. WELL...you guys probably knew this already but I had to research to figure it out.....skin shrinks when it's cold.... So here's my thought... my skin is getting tight, but not so noticable to me, the untrained eye, so when my hands are really cold & my skin shrinks more, it is pulled unusually taut than in the past when my hands were cold.... so the skin tightening at this point is noticable to me, only when my hands are cold. Anyways....so that's my theory, it makes sense to me as to why the skin being that taut is only when my hands are cold.
  13. I have read some of the stories on the ISN site, & that has helped me feel better about yesterday but man was I angry after that appt!!! I read the new ones that were just posted too, it sure helps in dealing with all this stuff to hear other stories. But I hate what others have had to endure. I had to switch from my Internal medicine primary care physician back to my old office & I saw him for the first time yesterday because my podiatrist wrote a letter recommending Mayo or something. Well, the first thing he said to me when he sat down was, "Well, I have looked through your file & you've seen just about every specialist & other than a slightly high RF your labs are fine. What are you going to do when I send you to the Gastro & he doesn't have an answer for you either? Then he said that he's going to send me to a psychiatrist for (whatever it is you call people who believe they have something going on when they don't, he use some word other than psychosematic or hypochondriac) & recommend anti-depressants! THEN, he said, I mean, I see the raynaud's in your hand so obviously not that but the other stuff. So, his point being that only the things he recognizes are real but not the others?? Then I asked him if Raynaud's can make my knees turn blue & his resonse was, "Blue knees! Now that's one I haven't heard associated with raynauds!" as if, I'm clearly making that one up & then when I asked about my nipples too, & I told him I couldn't find any explanation other than nursing moms which I'm not & he said that's true, as in, I couldn't possibly have blue you knows because I'm not nursing!!!!!! He just completely wrote me off, then I recalled that I had seen his wife a couple of months ago about the swallowing problem & the painful muscle spasms & she suggested that since there wasn't a diagnosis for them & I passed the swallowing test (which was liquid & it's tiny pieces & fleghm that don't go down) so I should consider counseling & anti-depressants.....He came into the appt with a preconceived notion about me due to his wife's notes a couple months ago I'm sure. He DID mention Sclero & looking into a couple of other lab tests that he didn't see on my lab work but I felt like he was snowing me on that as well, I could be wrong but what other ones are there besides the scl-70? I had a complete ANA panel I thought....we'll see.
  14. What is the difference between PT & OT? My Dr. agreed to send me for OT for my hands I will post a different post about that aweful appt later) but anyways...I asked for some PT for my hands, to get some range of motion back & maybe slow down whatever is going on & he said, "you mean OT, that's for your hands." Anyways, I'm glad you're going, I hope it makes a difference, both imporvement & pushing things back!!!
  15. First, if it's bugging you, it's important! I deal with the exact same thing. It seems for me that it can be even a couple of hours after eating & food feels like it's just sitting there & I have to really work to get it up because it's obviously not going down. Like you said, not acidy or anything...just a nuisance, uncomfortable. Often very uncomfortable. Sometimes I'll try eating bread or something to push it down but drinking some water or coffee DEFINETLY will not push it down. I had an appt. with a gastro dr. but I waited for 1hr & 45min. before I had to leave & get to class. So, I guess I will have to reschedule....I highly recommend you get into one as well. I had a swallow test done & it was negative but it was really really really a stupid test to take for this problem because the stuff they gave me is never a problem to swallow, it's not chunky or dairy so it goes right down no problem. Dairy is the other thing....do you have a problem with that? The way it started for me was last year, I started having to spit allot after brushing my teeth, like spit would just sit in the back of my throat & not go down (sorry if too gross)....it was a change I noted but it was nothing bothersome...just annoying having to keep spitting. Then it has progressed to where I'm at now. Eating sandwhiches with cheese & stuff like that makes me cough afterwards & there always seems to be left-overs in my throat....ewwwwwww. So...sound familiar? I wish I had an answer for it all for you.
  16. Does anyone have hard nodules or lumps in front of your ankles, right below the skin....although you can't see them, you can feel them, they almost feel like bee-bees (only a little bigger). They are tender. Just wondered if anyone knows if those are calcium deposits (I'll ask the rheumatologist but that won't be until January). Also, The rheumatologist says I have secondary raynaud's, but does any of this sound familiar to anyone..... Ok, here's my confusion with Raynaud's... Hands...they have never gone numb (not like my toes & balls of feet, where they're so numb that I don't even feel pain there). but they turn blue Feet turn blue, but not from cold alone.....hands do the same. It happens when legs are crossed, or sitting on my knees or when feet are crossed, or when resting feet on a spindle of a stool (where the arch of my foot is resting on the spindle). Hands do it when bent at wrist or arms crossed. Does anyone experience anything like that even when not cold? Also, I have never seen anything turn blue from stress.
  17. Does this sound like a layer of skin is shrinking underneath the top layer or something like that? Does anyone recall this being how it started for them? I have a description below & then Jefa (I think is how you spell her name) asked the question below my description which REALLY explains it. I can feel it pulling where the creases are. The skin on my fingers is starting to do this thing where sometimes when I straighten them, they feel like the skin is being pulled tight & when I look at my fingers (bottom side, not nail side) they look puckerd kind of, like vertical lines or something, it's weird. I just wondered if this rang a bell for anyone. It's like the listure in my hands drains out easy & my skin shrinks up, they don't stay this way, they go back & forth, depending on the position I guess that my hand is in, like sitting at the computer will do that. It's like the look as if there is something holding the skin down at the tip in an "every other" spot so my skin (vertically) will be indented, sticking out, indented, sticking out. Jefa asked: do the fingertip pads have vertical creases or wrinkles, as if the tissue under the skin has shrunk a bit, kind of like the surface of a raisin? I say totally.
  18. lauriejill, It's so funny you say you're intending to become a Hospice nurse, that's my 2nd choice....I think...lol. Sometimes I still lean that way but I still think it'll be PEDS for me. I'm excited for you that you finally got off the waiting list, long list her in MI as well. I'm taking the prereqs myself right now.
  19. Thanks for the input, I so appreciate it. I know it's hard to see what I mean over the net. My first symptom was raynaud's, last October (I mean, they could've been doing raynaud's with out the major blueness & I didn't notice that before Oct. but Oct. is when they wen t blue blue) Anyways, everything else has gone down hill since then. My hands started feeling tough or something this summer, my mom had asked me why my hands were so hard, so then I knew it wasn't all in my head. They have been getting tighter & harder ever since. I think the whole raisin thing, it seems to happen when my hands are coldest & dried out the most, & the creases are a mjor pulling on my finger tips....it's weird. I'm just getting so so so so frustrated. I'm sick of the pain, I'm sick of being tired. I'm sick of writing being so hard, I have to keep my pencil really sharp & use the cusion things otherwise it hurts my fingertips that hold the pencil when I wrote (that's above & beyond the pain). And then there's writing in cursive....it seem much harder, it's like my hands do NOT want to write out checks. My skin on my hands, it's like they can't hold moisture when elevated, so at the computer, the dry up & get really tight, but by morning, they're back to stiff, swollen & sore! I wake up every morning with my hands in a fist. Oh, & winter is arriving & I can't wear shoes because everything is too tight on my feet & makes them fall asleep (Podiatrist says it's systematic & he thinks neurological & he'd prefer I not mess around with my rheumatologist & just go to Mayo (or UofM or Cleveland). I won't bore you all with all the dragging on of details, You've all probably been there done that. I think I have PMS so I'm unusually irratated with myself today. My hands have slowly but surely been losing mobility in them, but ever so slowly over the last year & I just don't want to go running to the rheumatologist because I can see creases where my skin is pulling, as if attached to a layer below, but only where the creases are. I don't know! I'm trying to just hold off until I get to mayo & I hope I don't drive you all batty in the meantime! Ok, I'm done venting....for the moment...lol. I have a journal I keep everything in to help me cope day to day. But anyways, seriously thanks for the ideas, this board is great & all you here are great...I love the support! You're all awesome!
  20. Tara, I live in MI & I think mine says pretty much the same as yours. My Dr. filled it out & I got it in the mail today, I just have to take in the application tomorrow. SO, I say call your rheumatologist & get one ordered. It's your hands & fingers we're talkin' 'bout here! I want to preserve mine (& everything else affected by Raynauds) as much as possible.
  21. I've heard exercise is one of the biggest & best things we can do. I myself haven't been diagnosed with sclero, I have Fibro & Raynaud's Phenomenon (& occult connective tissue disease). I have seemed over the last year to get more & more symptoms that sound like sclero stuff, like the pads on my fingertips are tender & uncomfortable & they're getting pulled tight or something & my swallowing issues & stuff but who knows. Anyways, I worry all the time about preventing & slowing things down, especially since not having a diagnosis for many of my symptoms & not truly meeting the criteria for Fibro.....so I try to exercise as much as I possibly can....I think it's the best I have to offer myself.....& drinking lots of water....lol.
  22. Wowsers! Sounds like you have a very busy life goin' on. I can't imagine dealing with all that. I have never heard of the autoimmune brain disease one (I forgot what it's called but I looked it up after I rad it to see what it was...I remember that part.) That sounds really tough to live with. I'm glad you have a Sclero expert handling the disease, goodluck to you in finding a near by rheumatologist to deal with the other stuff. Nice to hear from you! Hopw you're able to get on more often soon. -luvbnmom3
  23. I just read through everyone's post in this thread....I see mine was mostly about why I'm here as opposed to who I am....lol. I mentioned kids husband already, I have 2 cats & 1 dog & 1 fish. I'm a student, studying to become an RN, hopefully in Pediatrics. I spend much of my freetime studying or researching about this stuff & right now I'm doing some research for a friend who's 3yr. old was diagnosed a week ago with CML (Leukemia). I'd say researching or studying is my favorite past time. I LOVE LOVE LOVE going back to school (I'm 32), but it is going to be a LONG time to finish since there is a 5 year waiting list to get into the nursing program here. It was fun to read everyone's posts in here....see who we all are outside of this autoimmune stuff.
  24. Thankyou so much for posting this. I called my rheumatologist & he filled out the application today & is sending it to me tomorrow! I am SO relieved, having one of those takes a huge load off my shoulders for school....I have been so worried about walking so much outside this winter! I'm about in tears over not having to do this!
  25. I don't remember what my user name was before but I think this was it, I should email Heidi & ask her so you all know who I am. I tried to stay away from here for a bit hoping maybe if I never thought about or read about the issues some would go away....no such luck! Anywho, I have a quick question, Monday I will come back on here & update & refresh you on who I am...I hope everyone is doing good. The skin on my fingers is starting to do this thing where sometimes when I straighten them, they feel like the skin is being pulled tight & when I look at my fingers (bottom side, not nail side) they look puckerd kind of, like vertical lines or something, it's weird. I just wondered if this rang a bell for anyone. It's like the listure in my hands drains out easy & my skin shrinks up, they don't stay this way, they go back & forth, depending on the position I guess that my hand is in, like sitting at the computer will do that. It's like the look as if there is something holding the skin down at the tip in an "every other" spot so my skin (vertically) will be indented, sticking out, indented, sticking out.