Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Hi , This is Tracey and I want to welcome you to the group. Please know you are in good hands here. Hugs, Tracey --- nkrags@... wrote: > Hi > My name is and I have had rsds now for 10 > years,upper > extermities. I have noticed a lot of changes in my > overall physical > condition buring this time. I now also have > diabetes and > hypothryroidism. Life has changed drastically for > me and my family. > Not many places to vent my feelings. So if you will > bear with me I > will probably go on a tangent. Thanks for your > group. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2000 Report Share Posted October 12, 2000 , WELCOME TO THE GROUP, It is a wonderful group . lot of caring and blessed people here my name is Anita R you may email me any time at areid@... may god bless you Anita R new member > Hi > My name is and I have had rsds now for 10 years,upper > extermities. I have noticed a lot of changes in my overall physical > condition buring this time. I now also have diabetes and > hypothryroidism. Life has changed drastically for me and my family. > Not many places to vent my feelings. So if you will bear with me I > will probably go on a tangent. Thanks for your group. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Andi, I felt worst after my Liver Biospy than I did after my ERCP. I was sick for three days after the Liver Biospy. Just for you info my Alk/Phos was evaluated to 1900. It now is in the 700 range and they tell me I am in the very early stages of PSC. And I see a Hepo and GI doctor. barbara >From: bluupoint@... >Reply-To: egroups >To: egroups >Subject: New Member >Date: Tue, 02 Jan 2001 03:13:56 -0000 > >Hello everyone, > >My name is Andi, Iam 40, female, 116lbs, 5'4 " . I have had elevated >LFTs for 5 years. They were found on a routine blood test done at the >Palo Alto Veterans Hospital in California. I was never referred to a >hepatolagist. A few years later I went back in and kept pushing them >for answers and I finally went in for my first ultrasound which came >back normal and later for a liver biopsy which was normal also. I >have no positive antibodies(AMA, ANA, SMA). The only elevations I >have are my ALK/PHOS(197)and my GGT(171)SED(24)and Iam hypothyroid >(5.59). Everything else is normal. My doctor told me after my biopsy >results came back that the only thing left to check for now was PSC. >He said he would have to do a ERCP. I hesitated and told him I needed >to think about it and would get back to him after New Years day. So >Iam ready to go ahead with the ERCP. Is there anything that I should >know before I commit to this proceadure. Is there any chance of >common bile duct or pancreatic duct damage?. I have heard some people >do end up with pancreatitis. Is this something that may become chronic >(pancreatitis), or is it caused by irritation of the pancreatic >duct?. The only symptoms that Iam dealing with now are fatigue, some >epigastric pain below my sternum and a little to the right under my >ribs. The pain is not constant and comes and goes when I have a full >stomach or if I have not eaten for awhile. I can feel the pain >radiating thru me to my back. Sometimes I have dealt with unexplained >chills and body aches. They come for a few days and then just as >rapidly disappear. I dont drink and I have stopped taking all meds >(paxil and NSAIDS). This lowered my ALT and AST and they have never >gone back up. My ALK/PHOS did go down some from the high 200s but has >never really gone into the normal range. I always get my flu shot >every year so I dont think its the flu. I have not had a cold in >ages. Iam so glad I found this group. Iam also a member of >liversupport and the PBC digest. Hope all of you had a terrific New >Years day. > >Andi > > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Welcome to the group Tim! 20 years with PSC, WOW! All and all, how are you doing? What medications have you been taking? I am sure you will be a very big help to the group. How did you find our group? Have a great weekend!!! Sincerely, wife of dx 97 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Hi! welcome to the group! I've had PSC for about 10 years now, and am in the process of being listed for transplant as a status 3 at Vanderbilt in Nashville. I've had one bleed, about a year ago, and have had some minor hepatic encephalopathy ( " brain fog " ). Other than that, I'm pretty stable, and doing quite well at the moment. Again welcome to the group! This is a great place to learn as well as to share.... athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 > and when into stage 4 3 years ago, My blood tests have stabilized, so I am > still classed as a Cat 3 at The Cleveland Clinic. What's up with these 'STAGES'? How are they classified? What did you have to get done to be given a number... I want a number. /24Male/Dx PSC Sep 2000/No IBD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 hi tim, welcome to the group.. 20 years huh..so much for the www site that says you should have played out 15 years ago...huh! anyway, welcome to the group...sorry you need to be here.. I can't give you much info since it is my wife with the psc and she was dx just last june..but there are some here that are post transplant.. in fact there is a real good article about a canadian doctor who is post transplant.. he is on the list often as " Aubrey " super super guy, lots of real good info.. see his story on the PCS Foundation site...go to www.pscf.org and click on the " Photos " button on the nav bar on the left...then click on the " Aubrey and Caroline " link.. we would love to add the story of a guy with a TWENTY YEAR history of PSC.. one of the first questions the newbie who joins this list is: how long do I have? I think its nice to say: we have a guy who was dx in 85 and transplanted in 97.. and we can then add, and another guy who has had it 20 years and still so healthy that he is " only " a Cat 3.. welcome, nose around the pscf.org site, and its sister site (www..com) and make some " new guy " comments to help us make'em better.. by the way, how did you find us? did a " search engine " lead you here? which one? DenverD: husband of Mette (44), UC '73, dx PSC 6/2000, alive in Denmark Latest on Mette is at http://www.terslose.com/mette/MetteNew.html Email: ordsmed%post1.tele.dk (replace % with @) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 >Well I gotta go play with my daughter... she's standing here handing me >balls and saying " come here Baba! " (ten points to anyone who can figure >out why she calls me Baba!) > >athan Maybe she is learning Turkish because " Baba " means exactly " Daddy " in Turkish. So, Did I get the ten points?. I myself have a beautiful 11 months old daughter. Aren't they the most wonderful things happened to us in the world? I get rid off all the stress that I have when I play with my daughter. By the way I am from Turkey and living in Stillwater,Oklahoma for my PhD(Animal Science).I got one more year to finish my PhD then I will go back to Turkey. I found this group through J-pouch discussion group. Serkan 30 UC dx 96 PSC dx 97 _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Serkan Erat wrote: > > Maybe she is learning Turkish because " Baba " means exactly " Daddy " in > Turkish. So, Did I get the ten points?. Close! Actually, my wife is half Arabic, and I guess " Baba " must mean the same in Arabic as in Turkish. I'll give you the ten points though! > I myself have a beautiful 11 months > old daughter. Aren't they the most wonderful things happened to us in the > world? I get rid off all the stress that I have when I play with my > daughter. Yes they are wonderful! My Daughter gives me even more incentive to make it through this disease! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 Hi I am Sue and I am from Mississippi. I was diagnosed with fibro in 1990. I am brand new to the computer (my son helps me alot) and I would like to talk to some others about this condition. I am usually on messenger so you can pm me. Thanks Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Welcome! Hey Deb, Sorry about your pain. But welcome to the group. Yes it is true here you will find people with every symptom you listed and then some. We almost all have more than 1 thing wrong with us. What came first? Usually something other than Fibro. Several of us have Raynaud's disease. My memory is shot as well as others here in the group. I am not speaking for them, LOL they have said they can't remember stuff. You will fit in just right with the rest of us. You sound just like the rest of us. Welcome, G. New Member Hi everyone, It's nice to finally have found a place where someone understands what I'm going through. About 12 years ago I was diagnosed with Raynaud's disease. A year later began having unexplained pains in my legs. I was always a very active person but found I was gradually doing less and less because of pain and fatigue. Over the years I kept going to doctors and being told it could be this or it could be that....trying different meds and taking physical therepy. Developed stomach ulcers and gastric lesions. Severe chest pains sent me to the E.R. numerous times but no one was able to find a cause. One doctor even commented that it was all a part of getting older so I should accept it and learn to deal with it. I wake up every morning with my body so stiff and painful. The least bit of physical exertion leaves my muscles feeling as though they've been ripped. My short term memory has become so bad I even loose the notes I make to remember (HA!). I get halfway through a sentence and forget what I'm even talking about. I can look right at someone I've known for years and not remember their name. No doctor ever asked about these things and I never questioned it, afterall, the doctor said I was just getting older. I even began to fear that it was possibly the onset of allsheimers. My headaches became so overwhelming that there have been times I just wanted to fall asleep and never wake up. It wasn't until I went to a neurologist because of numbness and tingling in my arms and legs that I was taken seriously. An MRI showed cervical stenosis due to degenerative arthritis, a Thornwaldt cyst on my brain, and mumerous brain leasions. I was also found to have severe hyperreflexia which led the doctor to suspect that pressure was being put on my spinal cord, but with a normal EMG and all other testing coming up normal that was found not to be the case. So, till no explaination as to the cause of the numbness and tingling, and now I've developed a constant cold/burning in my legs. With a doctor finally acknowledging that something was definately wrong but still no answers I made an appointment at Mayo Clinic. They have you fill out detailed questionares about your health and family history. The neurologist spent two hours with me on my first visit just going over all the symptoms and possibilities. NO doctor has ever taken more than a few minutes with me so I knew I was now on the right path. After a neurological exam, I was then sent for testing...a full body EMG, 24 hour urinalisis, blood work (11 vials total!),more MRI's... By my third day there I was given a definate diagnosis of Fibromyalgia/CFS. The doctor explained the different treatment options and is leaving it up to me as to what I want to try. He says the treatments that work vary from person to person and I should try different meds until I find what works best for me. Just knowing that I'm not crazy and finally having an answer has me feeling as tho a big weight has been lifted. I still feel that family and friends don't truly understand what I'm going through, but at the least I now have a doctor who does and now a website full of sufferers who know first hand what I'm feeling. Thanks for being there. Deb B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 It is really amazing to find a place where everyone understands what you're going through. For years I would ask my husband to rub my feet , legs and hands, which he did reluctantly, and now I'm realizing that the pains aren't all in my head (except for the migraines, hah). My symptoms started in my teens, and got worse as I got older. I just thought it was a part of getting older. It drives my husband nuts when I start a sentence and can't finish it...he says " spit it out! " . I search my mind, trying to figure out what it is I was saying. When I tell him I forgot, he said " no, you just don't want to say it " . Now that I've been DXD, and my husband is learning all the symptoms are part of a disease and I can't help it, he is much more understanding. It doesn't help that we're both BiPolar, but it was my pdoc who felt I had Fibro and he told me to check with my PCP. It was a real relief to get the DX, and I finally have the missing link. BTW, what is Raynaud's Disease? TIA, cyn At 07:49 AM 4/20/2004 -0700, GRAHAM wrote: >Welcome! Hey Deb, Sorry about your pain. But welcome to the group. Yes >it is true here you will find people with every symptom you listed and >then some. We almost all have more than 1 thing wrong with us. What came >first? Usually something other than Fibro. Several of us have >Raynaud's disease. My memory is shot as well as others here in the >group. I am not speaking for them, LOL they have said they can't >remember stuff. You will fit in just right with the rest of us. You >sound just like the rest of us. Welcome, G. cyn clmerritt@... Have you noticed since everyone has a camcorder these days no one talks about seeing UFOs like they used to? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Sometimes my husband thinks I'm psychic. I'll put in a DVD to watch, and he says he was just going to ask me if we could watch it. I'll go get him something to drink, and he'll say he was just thinking about asking me for that particular beverage. It even goes beyond that at times. We've been married nearly 14 years, and it's always been a part of our marriage from the beginning. I'll buy him a particular brand of coffee, like Jamaican Blue Mountain, and he'll say he'd been thinking about that particular brand earlier that day. We used to have to buy 2 of every book we were reading....sometimes we'd both shop separately and come home with the same books! It is very scary! We will finish each other's thoughts at times (I'm better at finishing his, lol! He finds my mind a complete mystery!) cyn At 07:27 PM 4/20/2004 -0400, WENDY WILSON wrote: >It was kinda scary that before we were even married, my hubby could finish >my sentences for me. It comes in handy. cyn clmerritt@... Have you noticed since everyone has a camcorder these days no one talks about seeing UFOs like they used to? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 , The book, "Behavioral Interventions for Young Children with Autism" by Maurice (I'm pretty sure that's the correct title) was my bible for a long time. Another absolute must read is Karyn Seroussi's book. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 , The book, "Behavioral Interventions for Young Children with Autism" by Maurice (I'm pretty sure that's the correct title) was my bible for a long time. Another absolute must read is Karyn Seroussi's book. Quote Link to comment Share on other sites More sharing options...
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