Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 My knees are the next thing to be replaced so yes they are very much involved, but I can still sit down in a chair and bend over to pick things up. I also use my feet to pick things up and then justcross my legs to reach my foot. The first sign your getting old is the bows on your tennis shoes are not centered LOL Deb By Gods grace, The Schuh Family Dan, Debbie, Dottie, Kody and Wyatt For information on Homeschooling, Crafting and Cooking as well as local information for Ponca City, OK. visit www.poncamoms.com thanks debbie thanks for the info on your hip, never heard of soft tissue growing into a replacement before, its sounds painful anyway. mine feels like something is pinching the mess out of something already very tender. when i sleep on that side too much its a lot worse, plus the weather here has been bad. i am not looking for any more surgery so i will wait til i can't stand it anymore before i even think about it, i am still in rehabilitation for my last replacement due to complications which really and plainly sucked! even so, i was shocked to see that you could bend over and pick your shoes up off the floor w/ out an assistive device anyway, your knees are not affected? i haven't been able to reach the floor or my own feet since i was 11. thanks, brandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 Rhonda, AIH is diagnosed by a combination of things. The SMA smooth muscle antibody is postive in a large % of people with AIH but not all, mine was normal From what I understand biopsy can confirm a dx and responsiveness to prednisone. Of course elevated AST and ALT (AKA SGOT & SGPT) are classic with AIH. Good luck with your diagnosis. Gpood luck, Patty [ ] Thanks Debbie I guess I've had the brain fog for awhile then. I've been getting sick every several weeks it seems, for about the last two 1/2 years. I just thought I never got over it in the first place. It all started when I got pneumonia back then. (Severely tired all the time. Had to sleep fourteen hours severaltimes a week. Thought it was because of epilepsy) Last year 1/2 I started vomiting every morning when I got up, and thought it was just sinuses. I finally went to my dr. and she said my enzyme levels were up, but probably just sinuses. Then this past Oct. I had started vomiting after every meal, and so tired I could barely function. My mom made me promise to go to a gastro. cause I lost so much weight (size 18 to size 10 in 2 months). I thought my gastro thought I had bulemia, then he called me back in 3 days later after the results of my blood tests and said my enzymes were 9 times what they should be. He signed me up for neuro. consults and a liver biopsy right away. I haven't been back to work since. He said the biopsy was most consistent with cmv, but had AIH factors. So he wasn't sure. I was doing better over the past two months and my enzymes had gotten down past the danger point. Then I went back for my checkup last week and they had nearly tripled from what they were last time. Do eye twitches and fluidlike pockets in the back fall under any symptoms you know about? Maybe I'll hear something today about the tests. He took a smoothmuscle test which apparently helps indicate AIH more clearly. I'm really just so clueless about all of this and don't want to think about the possiblity of meds. I'm allergic to all kinds and breakout in itchy rashes. What is the longterm prognosis of AIH? What are your limitations? I have lurked through your messages from the past year or two and have to say you all are really a very caring and supportive bunch of people. I'm glad I found you. You have been an inspiration. Thanks, Rhonda/TN ?AIH? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 I would like to know what kind of enzyme would be missing that the doctor was questioning. Makes no sense, but I am not a doctor....but would be intersting to find out if maybe that was why some can take Imuran and others cannot. Thanks. debby [ ] thanks Debbie Hi Debbie...Thanks I was a little nervous to try the 6mp, since the Imuran also made me feel like I wanted to die. My doctor said that it was weird that I got so sick, and maybe I was missing a type of enzyme. But thanks for the information it makes it a little easier to try to start a new medication. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 , My doctor told me the same thing and started me on Cellcept. I've done well on this. It is funny how different meds work differently for some of us. Don't worry. I would try anything to avoid the terrible nausea I felt on Imuran, and then others do fine on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 I had a red flag on that member from the get go after seeing his email address. No problem. Some people huh?! And to think this is a non paying job huh?! hehe Debbie tiredmom89 <angie_and_jason@...> wrote: Hi Debbie,I just wanted to thank you for being so fast at banning people that are being incredibly rude or who do spam. I really appreciate it. My husband was reading posts with me and he saw tony's post and couldn't believe how rude it was. I said don't worry Debbie will get him! And sure enough a few minutes later you took care of him.Angie and JennaFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 LOL I noticed that email as well. I thought......hummmm......Go Debbie Go!! > Hi Debbie, > > I just wanted to thank you for being so fast at banning people that > are being incredibly rude or who do spam. I really appreciate it. > My husband was reading posts with me and he saw tony's post and > couldn't believe how rude it was. I said don't worry Debbie will > get him! And sure enough a few minutes later you took care of him. > > Angie and Jenna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 Funny you mentioned the email address. My husband spotted that right away. Anyway, I wanted to let you know I appreciate all you do! You put a lot of time into this group and I thank you! I guess we will have to pay you in compliments! Angie I had a red flag on that member from the get go after seeing his email address. No problem. Some people huh?! And to think this is a non paying job huh?! hehe Debbie tiredmom89 <angie_and_jason@...> wrote: Hi Debbie,I just wanted to thank you for being so fast at banning people that are being incredibly rude or who do spam. I really appreciate it. My husband was reading posts with me and he saw tony's post and couldn't believe how rude it was. I said don't worry Debbie will get him! And sure enough a few minutes later you took care of him.Angie and JennaFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 That is funny - I noticed the address too, and checked his user id - you should see what his " hobbies " are... Great job Debbie! Kerri > Hi Debbie, > > I just wanted to thank you for being so fast at banning people that > are being incredibly rude or who do spam. I really appreciate it. > My husband was reading posts with me and he saw tony's post and > couldn't believe how rude it was. I said don't worry Debbie will > get him! And sure enough a few minutes later you took care of him. > > Angie and Jenna > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 How can you check hobbies and stuff? Re: thanks debbie That is funny - I noticed the address too, and checked his user id - you should see what his "hobbies" are... Great job Debbie!Kerri> Hi Debbie,> > I just wanted to thank you for being so fast at banning people that > are being incredibly rude or who do spam. I really appreciate it. > My husband was reading posts with me and he saw tony's post and > couldn't believe how rude it was. I said don't worry Debbie will > get him! And sure enough a few minutes later you took care of him.> > Angie and Jenna> > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 Debbie, You know, I did see that too, but I was giving him the benefit. I felt bad that nobody had responded to him, lol. Funny that he tried to act like he knew what he was talking about a little. I wonder how he ever ended up here of all places . Next time I'll look at the ID too! Thanks from me too! , mom to Hannah > Hi Debbie, > > I just wanted to thank you for being so fast at banning people that > are being incredibly rude or who do spam. I really appreciate it. > My husband was reading posts with me and he saw tony's post and > couldn't believe how rude it was. I said don't worry Debbie will > get him! And sure enough a few minutes later you took care of him. > > Angie and Jenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 LOL - no problem . I almost replied to him, but boy, I smelled a rat there or something. Cuz I always welcome about every new member, so something just told me to steer clear of him...And I did look at his profile, aye aye aye. LOL. I swear it takes all kinds in this world doesn't it??? Talk about needing a life huh??? Debbie <sarahhollis@...> wrote: Debbie, You know, I did see that too, but I was giving him the benefit. I felt bad that nobody had responded to him, lol. Funny that he tried to act like he knew what he was talking about a little. I wonder how he ever ended up here of all places . Next time I'll look at the ID too! Thanks from me too!, mom to Hannah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 Okay, you'll are making me all shades of curious, lol.... What was his name? Jen- TXTrentyn- 13 mo. DocBand 06/12/03 Re: Re: thanks debbie LOL - no problem . I almost replied to him, but boy, I smelled a rat there or something. Cuz I always welcome about every new member, so something just told me to steer clear of him...And I did look at his profile, aye aye aye. LOL. I swear it takes all kinds in this world doesn't it??? Talk about needing a life huh??? Debbie <sarahhollis@...> wrote: Debbie, You know, I did see that too, but I was giving him the benefit. I felt bad that nobody had responded to him, lol. Funny that he tried to act like he knew what he was talking about a little. I wonder how he ever ended up here of all places . Next time I'll look at the ID too! Thanks from me too!, mom to Hannah For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 Hi Debbie: We live right outside of Orlando in Apopka, Fl. We are probably about 45 minutes to 1 hour away from Melbourne. Maybe this weekend your family should come visit you since hurricane Jeanne is coming to visit us this weekend. But when you do come down to visit please let us know, we would love to meet up with you. We were going to a birthday party this weekend but now we are cleaning up and doing all the laundry in case the power goes out for a while. Thanks for all your advice, we really appreciate it. Take care and I hope your family is safe in Melbourne this weekend. Cheryl & Family - In blepharophimosis , Debbie Weston From <debweston@y...> wrote: > hi...welcome to the site! > > our daughter is also the only one in our family with bpes...and had surgery at 9 weeks (frontal slings) to get her eyes open...they seem to be holding up well...she is 4 1/2 years old now and is doing great...we were concerned that she may need to get the slings done again...but she does not....as far as the surgery to open her eyes further...we have decided to let her be a part of the decision process and wait...even though there are surgeons that will do the surgery very early... > > i know that this can be so frustrating not knowing what to do for your child...wanting the best...wanting answers...my husband and i have found that by asking tons of questions and getting several opinions has helped us feel very secure in the decisions we make for our daughter...(some doctors might not like that and if so then i wonder what they have to hide...ask for references from other folks they have performed the surgery on...get a second or third opinion...keep asking questions...look up different articles...) > > we have also hooked up with a couple of families in our area and that has helped us so much...it is a wonderful support network in addition to this site... > > where in florida do you live? my family lives near melbourne and we travel down there quite a bit from the atlanta area...in fact we will be there this weekend...would love to meet up if possible...take care...debbie > > keith8ll <keith8ll@y...> wrote: > Our son Darryl has bpes, he is the only one with it in our family and > we have so many questions. He had his first surgery done when he was > 5 weeks old cause he couldn't open up his eyelids at all. He looked > like he was sleeping all the time and cried alot. Since the surgery > he is doing much better and is now 8 months old and needs to go in > and get an adjustment done cause his lids look low again. I was just > wandering if anyone from Florida is in this group? I'm also just > wondering if my husband and I are doing the correct thing for our > child, I just feel like were kinda in the dark and just going by what > our doctor tells us. We have a really wonderful surgeron and in his > 20 years or so of practice he has seen a few children with bpes but > Darryl is his youngest patient to date. I have read some of the > group talking about genetic testing. If we go see a genetic > counselor how can they help us? > Any information anyone feels like sending our way would be very much > appreciated. > I think this is a wonderful group with lots of great information and > look forward to being a part of it. > When we get time we will be posting pictures of our Darryl and his > other sister and brother as well. > Take care everyone. > Cheryl, , , Hollie & Darryl > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Hi - Thanks for the info - I didn't even think of asking for a sample I take the isosorbide about 20-30 mins. before a meal..10 mg. it helps me..not all the time but enough to keep weight pretty stable..I take procardia extended every day in morning..this was recommended for swallowing but I don't find it helpful for that at all but it does help with my spasms..although it comes with side effects...low blood pressure..swollen legs..i used to take nitro..but too many headaches..I thank you all for your knowledge and support..it certainly is helpful.. in California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 , I used to use Procardia (nifedipine) before meals the same way you're using the isosorbide. (I have low BP to begin with -- 70/50 at the time -- and the headaches and drop in BP meant that the medical route simply wasn't a workable option for me.) I found that the "extended release" nifedipine didn't do SQUAT for me, and I had to take the fast-acting version before meals. You do realize that both drugs you're taking (isosorbide and nifedipine) have the same effect on the body, right? They both relax blood vessels to reduce blood pressure -- that's why I find it so odd that you're taking BOTH, esp. since the side effects are problematic for you. You should be able to stop one or the other and just do the before-meals dosing. If the nifedipine is supposed to be stopping you from having NCCPs (non cardiac chest pains), I would recommend trying a low-dose antidepressant instead (Paxil, nortryptaline, amitryptaline, etc.). Many of us have found that the effect of serotonin on the brain often will interrupt that "pain" signal that causes the NCCPs. No sense taking nifedipine if it gives you headaches and makes you pass out all the time!!! )Debbi in Michigan PS -- have you checked to see if you qualify for Medicaid, since you don't have insurance? Hi - Thanks for the info - I didn't even think of asking for a sample :)I take the isosorbide about 20-30 mins. before a meal..10 mg. it helpsme..not all the time but enough to keep weight pretty stable..I takeprocardia extended every day in morning..this was recommended forswallowing but I don't find it helpful for that at all but it does helpwith my spasms..although it comes with side effects...low bloodpressure..swollen legs..i used to take nitro..but too many headaches..Ithank you all for your knowledge and support..it certainly ishelpful.. in California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Oh man Tim, you aren't using that on your skin hon? My mom talks about having to use lye soap as a kid, and according to her it was very harsh. But I can get you a recipe for Lye soap if you want. LOL Love JanetHillbilly Tim <knoxweb1@...> wrote: what about lye soap?@5 usd. a bar? i just bought a bunch at dollywood.its all hand made? Tim Parsons 2309 bakertown rd knoxville,tn 37931 865-258-2196 cell 865-588-2465 x107 work www.knoxville1.com Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Take the ordinary things of life, and make them your own. Do the impossible with a smile Quote Link to comment Share on other sites More sharing options...
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