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Everything posted by luvbnmom3

  1. My Neuro from Wayne state University called on Friday said tghat my anti-cardiolipins are high but that she isn't sure why since I haven't had any miscarriages or blood clots (that we know of). My husband had a vasectomy after our 5 yr. old was born and you have to be able to get pregnant to have a miscarriage. I did have eclampsia & a sizure in labor with my 5 year old and read that APS can cause multiple sclerosis like symptoms (which is what my regular Neurologist keeps looking for) as well as other Neurological symptoms & Livedo reticularis (the reason this new Neuro ran the cardiolipin test). Another thing is heart valve issues, particularly the mitral valve. 2 years ago a Cardiologist said I had minor right mitral regurgitation.... wonder if that is related. Anyways, no solid answers but she's looking further into it and reminded me that some people, like her friend, go years with a negative ana and that she'll let my primary physician know that it is not fibromyalgia. She said to see a Hematologist in 2 montha & retest the anticardiolipins. The anticardiolipin screen was high 2 years ago as well.
  2. Hi all! After that last appt. I had with the rheumatologist, I really didn't want to go to my appt. that was previously scheduled by my Neurologist. I just thought that if a rheumatologist that is a member of the American College of Rheumatology is going to say what he said, then why would a Neuro at a university be any different you know? Anyway, I took my best friend (haha...as my kids would say) with me to Wayne State Uni. and we saw a Neurologist there who actually LISTENED! It was the strangest thing...haha. She checked me over & ran several tests, she wanted to rerun all the tests I had done at the first Rheumatologist appt. I had 2 years ago (end of June). She asked me what the rheumatologist said in regards to the Esopho. motility dysfunction & the radiologist saying crest, when I told her he said that my skin looks just fine right now so not likely crest; she just shook her head no & looked up at the 2 interns that were with her & said, "that's textbook, not all patients present the same." She said something connective tissue is going on, we might not have a name for it right now, and that she has a collegue who has Rheumatoid Arthritis and her labs were always negative until 12 years into it. Then she looks up at the interns again witha can you believe it! face & says, "So she was sero-negative for 12 years!" She was really interested in my RF being elevated (even though only slightly)... mentioning it numerous times. She pointed out livedo reticularis on my arms & legs, is running tests I've never had before.... yada yada yada. At any rate, it was GREAT (understatement) to be listened to and have someone validate that what's going on isn't normal or all in my head, especially with a witness...lol. She said it'll take a few weeks to get everything back and that if I get any new symtoms or have any questions or want to see her again to feel free to call her & she gave me her business card. Wow. She never mentioned fibromyalgia either as a possibility. OH... I was seeing the Neuro because of all the muscle weekness, twitching, spasms, cramps, and the reaction to the Adderall which she said would only be the case with Protinix if any electrolites were low at the time....which they were.
  3. luvbnmom3

    Update on Lisa (Peanut) from Best Friend

    I was wondering what the link is to her website, I can't find it on here. I read the thread that she went home & is doing better, but I just wondered how her progress was going.
  4. luvbnmom3

    An update from me....

    It sounds like you have some good doctors checking things out, I hope that after the 17th testing that you have some more concrete answers & help for your symptoms, I don't know what part of the country you live in (or if that matters) but heading into the colder months; it'd be nice to know more about what you're dealing with so you get proper care.
  5. Wow, that is interesting! As I read the, "It's not...." sententence I was like, well then WHAT on earth are they?!?! Anyways, that's great to have a concrete answer. I hope you get to feeling better & they all go away soon!
  6. luvbnmom3

    Good morning Everyone..

    That's so good to hear that you're feeling better and that your doctor is trying to help as best as he can! I hope things continue to be less overwhelming for you at home. Being overwhelmed is my least favorite thing. Hang in there & keep taking care of yourself... have fun in the flower bed!
  7. luvbnmom3

    Pain in ears

    Occasionally I get sharp pain deep inside that lasts seconds & goes away, I do get a dull ache that lingers now & then with no known cause & often my ears feel like they are plugged, like they're submerged under water, but a doctor, a few, have confirmed they are not plugged. I have NO clue what is up with that! All I can think of is jaw related. I hope you get some better info than I've got!
  8. luvbnmom3

    Time to celebrate

    WOW! Congratulations...that is SUCH an accomplishment!!! I'm geeked for you, proud of you & I hardly know you! Well, I JUST got to get on the computer, I haven't had a chance to come to this board in a while & now that I am on I have to go....kids are swarming around me wanting to do something....haha. I am looking forward to buying the book, I saw there are links to it, I just went & looked at it. WOW how exciting!!!!
  9. luvbnmom3


    I'm sure part of it has to do with my shoes which are rubber, I've worn that brand for a few years with no issues but this pair hugs my soles more (even though they are open toed & just have to straps over the top of the foot). Anyways... does anyone deal with hyperhidrosis or did you ever at any stage? I have had night sweats for sometime now, but weirdly, the week they stopped, my feet decided to do the sweating instead! I haven't soaked my sheets at night for about 7 weeks & my feet, which never sweat before, are now raining & only when I start walking in those sandals... it is literally like walking in a puddle. I did read that "scleroderma-like" skin thickening can be a cause of hyperhydrosis.
  10. luvbnmom3

    My Story

    gina.... sorry my message is so long, Now that I see it posted it looks like a book! I wanted to tell you my symptoms that are like yours... I probably could've just listed the similar ones instead of elaborating! I gotta work on that! Anyways, I hope you find some answers! Have any doctors ever put on on an NSAID to take regularly for the pain? If it is imflammatory, maybe that would help?
  11. luvbnmom3

    My Story

    I had a small seizure during labor with my 5 year old (no eclampsia) and that night everytime I started to fall asleep my body would do that jerk thing & wake me up (which I think is usually a normal thing...probably not to that point that you can't go to sleep though) after numerous times of being jerked awake they gave me a sleeping pill so I could go to sleep. No more seizures but my muscles get spastic in my shoulders, back, and abdomen, and my shoulders tremble (on the inside), and sometimes my leg will jump or a finger will but neurologically I appear fine. I see a Neuro at Wayne state at the end of the month. I have not been diagnosed with sclero (by a rheumatologist, the radiologist wrote "crest") Anyways, My skin gets tight & shiny on my hands & fingers as well (looks hidebound or like a raw but dry, boneless, skinless, chicken breast... that comes & goes BUT, it used to do that JUST on my nuckles (1+ years ago, looked like webbing between nuckles), now it does that tips of fingers down past my wrist. I have Raynaud's and my nailbeds are ALWAYS white. My rheumatologist said that my skin doesn't look tight to him (at that moment in his office & it didn't to me either at the time) & that probably my skin must just feels tight sometimes but it isn't tight (aka...it is all in my head) & since my ANA is fine, the esophageal motility dysfuntion the radiologist found and the Raynaud's I've had for 2-3 years must be unrelated (coincidence) and that I have fibromyalgia (which is what he told my Neuro). Acid burns the back of my throat especially at night (I told the doctor no to that because "out of sight out of mind" so I forgot about it...especially night time symptoms I forget) and as of late, I seem to get a sore throat that comes & goes throughout the week. I had pain all over until my rheumatologist put me on an NSAID, I took it for 10 months & have never been in pain like that since. I only get it when my skin is tight (in my joints) or in my muscles during and after a spastic "episode". When the Raynaud's started in the fall 2005, spring 2006 I started swelling in my legs, my whole body, face, back, edema everywhere. It was pitted, now it isn't. I didn't get diagnosed with Raynuad's until July 2006. I still wake up with swollen hands, although they haven't been as swollen the last couple of weeks....maybe that's a good thing! My legs are swollen often, if I try to sit on them, my calves feel like they're going to explide like a water balloon. I also have lots of hairloss, chronic sinusitis, itchiness mostly on torso, ankles, feet, & scalp (I guess I could've said all over ...hahahaha) and migrains without headaches...supposedly anyway. So, I'm sorry I'm not much help as far as saying I can relate to much and I have sclero, since only a Radiologist said sclero, but I can relate to a bit of your symptoms. Hang in there, I am so sorry you are dealing with all of these things, it is very frustrating not knowing what is going on and not being taken care of. The pain I had was debilitating and embarassing (everyone thought I was a whiner since whenever they'd ask me "why not?" if I didn't want to do something I'd respond with "because it hurts." but my rheumatologist did take care of that with the NSAID. At this point, I too just want help & I want answers, so I hear you loud & clear!
  12. luvbnmom3

    Confused and relieved all in one...

    Jefa - They are treating my symptoms except for the muscle issues. I have Protonix for the Esophogus stuff, Verapamil for Raynaud's/headacheless migrains (can't say it has helped the Raynaud's since it continues to get worse...but maybe it could be worse yet?) & I have had a problem with some freakish discomfort & sometimes pain in my back, right where my right kidney is... that's been slowly progressing over the last year... I used to say that when I am driving in the car/truck, it felt like there was an area 'bout the size of an apple, that felt like my clothes were bunched up or like there was some "mass" (for lack of a better word) & I always had to adjust the way I sat so it didn't irratate me & lately I've decided what it really is is that the skin on that area of my back is thick & stiff, not very maneuverable. I vaguely mentioned it to the rheumatologist he said my back looks fine. Jensue - I have for sure heard of joint pain from Raynaud's... but I don't always have it with an attack. Karen - One of the 3 internal med doctors I've had (I sw him when my skin was getting tight just over my knuckles a year+ ago) he said it was eczema & prescribed me a cream too... I never went back to him nor did I feel that Rx. The doctor I have now, he also siad Eczema when he saw my cracked nuckles and Rx'd some steroid cream... I filled it & tried it just to humor him, then he can't say I didn't try. But I also explained to him it only cracks over my knuckles when it has been tightening alot over a few days. Craig - a hair over 2 years ago I had a pretty good panel of tests done; everything was negative except a slightly elevated Rheumatoid Factor and the Cardiolipin screen was positive. So they checked IgM, IgG, and IgA... IgM 5.2, IgA <4.0, & IgG "TNP" whatever that means. All normal anyways. Since then my kidney function took a nose dive from great to ok, but is still in the normal range, my WBC is always low end normal or below, & both potassium & BUN have been low end or below normal. I think they checked my ANA again a year ago & it was negative. My sister has Grave's disease and she went through the wringer for 2 years before they gifured that out with her. I wish my doctor would take the reigns & figure stuff out for me! Twice now I've had problems with Rx's and doctors had no idea what was going on, I did research & figured it out myself & even then doctors didn't believe me at first... The Relafen... 10 months after taking it my eGFR kept declining, down from 103 (perfect for my age), I suddenly wasn't able to eat meat because it tasted horrible (like blood), they insisted the Relafen wasn't causing problems with my kidneys. I quit taking it at 10 months anyways, eGFR continued to drop until I'd been off it for 6 months. I started wanting meat again, tried it & liked it, had my eGFR checked & it had gone back up (never back to 103, but up from 69.) THEN, I just discovered my body was having symptoms of AdderallXR overdose, even though I'd had the same dose for a couple + years. They didn't believe me that it could be the protonix since nowhere does it state those 2 drugs interact, so I called the pharmacist & explained my "theory", she agreed & said to call doctor back & tell him it was likely the case.
  13. I can't recall if I mentioned, but I had a barium swallow & the radiologist wrote on it "refer to Rheumatologist/CREST" and I don't remember what his findings were. Anyways, I brought pictures of my skin with me & The rheumatologist refused to acknowledge that my skin was getting tight on my hands... he insisted that if I hold my hand just so I can probably get it to do that & that what is really going on is that sometimes it feels tight, but it isn't. It goes without saying that he's dead wrong about me being able to "fabricate" tight skin on my hands, surely I would have been able to produce the same appearance "on command" in his office. I asked, "Do the pictures look like Scleroderma, he said, "well, like I said, you could hold your hand just so...." <_< Can I post a link to pictures so that y'all can see what he is disregarding? You are the experts, I want honest input from you know? SO... here is my dilema: 1) He says my hands look fine right now (and they did look just fine), so does that mean that as the skin gets tighter, there aren't days where it is more obvious than others, yet at the same time it is slowly getting permanantly tighter? So the "worse" days are worse than they used to be.... like it used to be just over my knuckles when it would get tight (1 year ago) now it is from the tips of my fingers, down over my wrist. 2) I KNOW that my face is doing the same as my hands, when I cried, hard, a little while ago, my cheeks were too stiff to let my mouth feel like.... I don't know how to explain it, but I know my skin is stiffer... it isn't hard & shiney, but does Ssc go from normal skin to hard & shiney overnight or is it a process? 3) I want SO BAD to believe him, I feel like had he said, "Yeah, your skin does look pretty taut in those pictures, I'm not sure why they're doing that but in Scleroderma, once they start looking that tight, they stay looking that tight & get hard... something like that, but no, he completely dismissed that the skin was physically tight...said I'm only feeling it. Do I just walk away from this? He is a member of the American College of Rheumatology so he is supposed to know what he's talking about right? He said, "Plus your ANA was negative so I don't feel that the esophageal "mobility" is related. You have Fibromyalgia." He then agreed that I have ZERO of the pain/pressure points but since I did on the first visit (2 years ago) that it must be Fibro. I haven't had Relafen for 14 months & still havn't gotten the pain like that back.
  14. luvbnmom3

    Checkups tomorrow

    Ok....don't laugh but I planned to reply & can't recall if I did or not...& since it isn't posted immediately & it has been 5 minutes... I'm not sure so sorry if there ends up being two...haha. That is so awesome that there is someone that is near by that you can connect with in person! I'm glad your appt. went so good, steady is super! Does the diffusion test tell the doctors how well your lungs work with the diffusion of gases in & out of the lungs etc.? I wondered because I asked my reg. doc if there was any such thing as something affecting the gas diffusion in my lungs & maybe that is why I smell ammonia (in my nose only). He acted like it a rediculous idea & tested my lung capacity to show me there wasn't anything wrong with the gas diffusion. Anyways....blah blah blah....haha. I'm excited for you that your lungs didn't change over the last 6 months. What is the predinisone taken for? When he says "try to get it down" does he mean you'd be ok on a lower dose & he's giving you permission to slowly work yourself down to a lower dose? Do you feel worse without it? Sorry all the questions.
  15. luvbnmom3

    Xrays Today

    Ow! That all sounds painful. How does that cutting skin off work? I mean, I'm sure I'm imagining it all wrong in my head... the bone is rubbing on skin & hurting, so they cut the skin off... but we need skin or the bone shows... 'scuse my ignorance here...I'm really curious! I have skin pain sometimes where bone rubs on top of my foot, right below the big toe, the skin will be white, like pressure from bone pushing against skin, I don't know if it is the same kind of pain, but oh does it hurt! I hope your foot heals up good & you can get rid of that pain. Do tell me how that whole skin cutting off thing works.... you can PM me if it is TMI!
  16. luvbnmom3

    Rheumatologist Appointment

    When you say sheep skin lined, do you mean that thick, fur like lining... you can get it in a mule? Yeah, I miss them during the summer too, they aren't too attractive with shorts, I would so wear them...hahaha. I do around the house sometimes though. Here's an inexpensive way to get "warm" shoes.... 1 size too big with fuzzy socks. I bought some fuzzy socks from the airport in July because my feet were cold while I was waiting for my flight... they've become my favorite fuzzy socks, but I have 4 different pairs that I wear with a pair of shoes that I bought a size too big so that I can wear fluffy socks in!
  17. luvbnmom3

    Rheumatologist Appointment

    haha. I bought a pair of metalic silver moon boots on clearance one year for $5 & I call them my moon slippers, I bought them solely for wearing around the house to keep my feet warm. This year, I bought some of those teddy bear lined boots...WOW are they warm. See... I hear all this stuff from you all with the exact same issues as me yet to those here with me... it HAS to be in my head. Anyways... good day to you ALL.... I hope it is pleasant!
  18. luvbnmom3

    Rheumatologist Appointment

    Wow...I have never heard of anyone with the same shoe problem as me, another one of those things that my doctors think is just weird... I can't wear closed shoes either for the same reason. My Raynauds is worse every year too. My rheumatologist did the nail fold test on me too & said the nail folds were abnormal but when my labs came back negative he said Fibro, actually, RF was slightly above normal & Cardiolipin screen was positive so they ordered more tests on that & they were fine. After first visit 2 years ago, he said possible occult connective tissue disease. Anywho... that is SO awesome that you have a Rheumatologist who is being so thorough and getting you the care you need. Please keep us posted as to how things go and I hope you are feeling good!
  19. luvbnmom3

    Confused and relieved all in one...

    B) Thank you so much for your comments. I have never wanted a cigarett so bad...haha. I have an appt. with a Neurologist at Wayne State (because of all the muscle stuff & my Neuro is coming up empty other than me discovering the Adderall change) & I don't even want to go because I feel like if I spend money on gas & child care & the appt. & he finds nothing that my husband is going to write my sanity off for sure and I swear... I am so ready to just lay down & let whatever it is that wants my body have at it because I feel like it can't be worse than having a single person talk to you like you're a hypochondriac, let alone your own husband. He won't even discuss with me my appt. with the rheumatologist!!! It's that whole "moving target" of symptoms thing. Anyways. Thank you , thank you, thank you for replying, every single reply is a little piece of peace for me... :rolleyes:
  20. luvbnmom3


    Hello all! I have some on my toes, feet, & a couple on my hands & face, do these ever come & go or are they always permanent?
  21. luvbnmom3


    Haha... the bra thing cracked me up. I can't do front closures because if I bend over... it'll come undone & the sisters go flyin' away like a sling shot & come back like a boomerang. I read through & I can't think of much else we need in Sclerodermia... 'cept maybe a personal airport so that we can go see family & stuff... the airplane can only be airconditioned in the pilots area of course. I see we've got khowledgable doctors on all phases of Ssc, can we maybe get some educators in there for spouses as well? Obviously it'd have to be in the southern states due to snow... preferably one that isn't humid yes? I was thinking too, in this fantasy... there could be a spa type place we can go to where they have a special room where the air pressure or something is different... can't find the words I'm looking for.... so that while you're in there, you get like a 30 minute break from your tight skin... I know.... that's a stretch but it sounds good at the moment...haha
  22. I was wondering the same, I couldn't find her name.
  23. luvbnmom3

    ISN Koozies

    Those are really cool, I didn't know they were there! I just went & looked at them, I may have to get some of those, I always need them (Probably everyone here does) when holding any cold drink because of the raynauds.
  24. luvbnmom3

    Update on Lisa (Peanut) from Best Friend

    Thank you for taking the time to come in & post updates, as you can probably see by the number of replies.... it is appreciated! That is great, tell her to continute getting better & we'll see her when she is ready to peak in.
  25. luvbnmom3


    Hey Craig... newscasters... those guys are into makeup. So if you ever decide to on a career in broadcasting... you know? Ann.... That is interesting about the bleeding ones, do they just bleed into the skin? For a long time I have had some bleeding into the skin on my toes, mostly big toes, then eventually I didn't see it anymore but there are telangiectasias in that same spot now. That blood, little pin stick dots, would eventually surface & go away (like a miniature scab just disappears). Is that what yours do? Snowbird, I wondered about coming & going in the same spot & then staying at some point too (like in the above with Ann) plus I have had some spots show up that look like Telangiegtasias but come & go in the same spot. However, the ones on my face, I've never seen them come & go, I'll look in the mirror & see another spot & it stays. Thank you all for your replies, everyone here is SO helpful. This disease (or whatever is going on) makes me feel so alone sometimes. I can't talk to anyone about it, not even my husband because he's sick of the stuff with the doctors. He's even been through the same thing before (& eventually got a correct diagnosis) so you'd think he'd be more understanding! Especially since I dug in on the net to help get to the bottom of it & get him to the right doctor (ringworm for 7 years, a few different doctors, all calling it eczema which we KNEW it was not.)