Guest guest Posted August 24, 1999 Report Share Posted August 24, 1999 Sandy wrote, in part: >I went to a wonderful Dr. at Univ. of Mo. for the disk >problem. He also has done major research in the field of ACM. So I go >back to him Sept.7 for a good talk about this problem with the ACM and >I go in Sept8 for surgery on my disk. So anything you all can tell me >would be very appreciated. You say he has done " major research in the field of ACM. " On your next visit I would suggest querying him a bit more about this, i.e. what is his definition of " major. " Phoenix, AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 ny, Welcome to the group, sorry your PSC brought you here. Your question about questions was well answered recently by Barby, and is in the archives at http://groups.yahoo.com/group//message/27867 you may need to log in to yahoogroups to get there. In message 27866 Martha explaned how she gets questions to her doctor before the appointment so the doctor can think about them in advance. Tim R --- ny Sewell wrote: > I have just subscribed to this group. ... > I went through a whole bunch of tests.... sonogram, pipida, ct > scan, more blood tests, and then last Thursday (9/6/01) did the > ERCP procedure and the GI doc said it was for sure PSC. > > So I am waiting to see a liver specialist at the University of > Kansas Medical Center. I have an appointment on September 20th. > ... > So I need to make a list of questions for the new Doctor. We > already have a few but if you have any that we should be asking > let us know. ... > ny __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 Welcome ny and Ali, Glad you found us. You'll find a lot of answers to a lot of your questions here as well as a lot of emotional support. One of our members Barby lives in Kansas, not sure if it's Kansas City. We have members from all over the world and some of them are very knowledgeable we even have a doctor Aubrey who lives in Canada. He is also one of the members who has been through a transplant. Peg, wife of Phil (58), UC 30 years, dx PSC 12/98, listed-status 3-UCLA-2/2000, living Los Angeles suburbs, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 Thanks Tim, I printed out that list of questions. Had to spend a little time getting the groups login to work but was successful. Take care, ny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2001 Report Share Posted September 25, 2001 , alot of folks found their symptoms disappeared while pregnant.... Patti >From: juliespud@... >Reply-To: >To: >Subject: Re: New Member >Date: Tue, 25 Sep 2001 01:12:52 -0000 > >Hi new member, > >Welcome to the group. I usually don't post much...only read, but I >have found a lot of comfort in reading how everyone else copes. You >sound a lot like I did when I was first diagnosed. I was turning 21 >and all the books I found on PSC basically made me feel like I was a >gonner. When I was in school, I learned about the phases of the >grieving process for parents who gave birth to children with >disabilities (I'm a speech therapist), and I think it applies to any >disease. There is anger, denial, sadness, and then finally >acceptance. I always have those " why me " days, especially when I see >my friends, and they are all a buzz about having babies (my doc told >me I shouldn't have children because it will exacerbate my condition) >but then I look around and I think, it could be so much worse. My >best advice, take your medicine, get your check-ups, keep working >out, and don't get locked up inside yourself. Find comfort in your >family and friends. > > in Baltimore (PSC dx 1993, IBD dx 1999) > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2001 Report Share Posted September 25, 2001 Hi! I can so so so relate to you! I am 32! ALl of my feelings have been and are and wax and wane exactly what you have described. My mjor rant here has been the inability to get your hands around PSC so to speak. It varies so much. Only those of us here know how FRUSTRATING that is! Rant away we have all been there. Suddenly you feel much older than 32 don't you! One thing I am learning is this is a slow moving disease that probably won't steal any time today. I finally got to the point that I felt like every minute spent focusing on PSC was a minute it had stolen. I know that one day there won't be a choice but today there is and this is my time. It doesn't belong to PSC yet. Hang in there. Read the archives. You will learn so much! Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2001 Report Share Posted October 17, 2001 hello there Peggy. If you bank and plan, you can have that beer. You have to ask yourself is it worth it, and there will be times you will stand up and shout " yes! " . Other times 'no'. Had a guy once try to convince me beer was a grain and wine was a fruit. tsk, tsk, tsk. Good try though. My daughter is also a SAHM. Good for you. I was until the youngest went to school then I went back to the workforce. Each has its rewards doesn't it. She quit an extremely well paying job and doesn't regret it for a minute. Company coming for dinner tonight, I need to go move dust bunnies around. Company at my house eats on WW, they just don't know it. Chicken parmesan, baked potatoes, asparagus (I froze loads of it last spring), and ice milk with strawberries (froze loads of those also). Also, home baked soughdough bread. My favorite. Eileen ******************************************** If you think you can, or you think you can't... you're right!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2001 Report Share Posted October 17, 2001 can I come to dinner tonight? Re: new member .... Company coming for dinner tonight, I need to go move dust bunnies around. Company at my house eats on WW, they just don't know it. Chicken parmesan, baked potatoes, asparagus (I froze loads of it last spring), and ice milk with strawberries (froze loads of those also). Also, home baked soughdough bread. My favorite. Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2004 Report Share Posted September 28, 2004 Virgil, Hi, and welcome to the group. I noticed that you have had FMS and CFS since the Gulf War, which is of interest to me, because you may have developed it in a very similar way as I did. Prior to being sent to the middle east, were you given the Anthrax vaccine, or were you at any time given courses of the antibiotic Cipro? The reason I'm asking is because there is thought to be somewhat of a link between the vaccine, prophylactic use of Cipro, and " Gulf War Syndrome " , which is really FMS and CFS. Another reason I ask is because I developed Fibro after being given Levaquin, an antibiotic in the same chemical family as Cipro, and I was told by the leading specialist on fluoroquinolone adverse reactions that, beyond a shadow of a doubt, damage from Levaquin and Cipro can lead to Fibro. Since you are having so much trouble with Neurontin, you might want to ask your doctor about taking Topamax instead. It's the same type of drug as Neurontin, but doesn't seem to have the same nasty side effects. My doctor tried Neurontin on me, and it was a very ugly experience. I only got to 300mg before I got really " out of it " , as well as becoming borderline psychotic. Topamax CAN make you somewhat sleepy, but the bulk of the dosage can be taken at bedtime to counter that effect. I take 100mg in the am, and 300mg at bedtime. I also hope you had luck with the doctor in obtaining a pain med and muscle relaxer. Relief meds are a godsend when you are hurting really bad! Again, welcome to the group, and I hope you feel at home here! Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Hi , Big hugs for you. I too am married to a military person. Life in the military is quite difficult. I've had to move every 2 1/2 - 3 years (except this last time where we got lucky and it's more like 4 1/2 years). Every time I move I break down (I have bipolar); my migraines get even worse (I have chronic migraine disorder); along with a host of other things. Hubby just got back from 7 months in Afghanistan. It was not easy, and never is. This was his 4th deployment. The first 4 years of our life he deployed 3 times and was gone about 75% of the time. I don't make friends easily, but am lucky where I am now to have civilian friends. As an Officer's wife, the spouses club doesn't agree with me. They are too materialistic. But if your hubby is enlisted, I find the enlisted peeps soooo much friendlier. I was actually best friends with an enlisted man's wife and we helped each other get through one of the 6 month deployments. If I can do anything for you please feel free to email me privately or on the list. Even if it's just to listen. I know it can get quite lonely. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Hello everyone, I am a close friend of Sherry's and she has been letting me know how things are going with her mom so I asked if she thought I could join the group as well.I am an LPN currently working in pediatric home care , have had years working in nursing homes both as a certified aide and as a liscenced nurse.There is a possibility that I my go back to geriatric nursing in the future and thought it would be a good thing to be up to date as it were on diseases, etc of the elderly.For the most part I'll probably be a lurker at least for a bit,working nights and dealing with fibromyalgia sometimes all I do is get my emails and skim them til I have time to read,lately I have had alot of stress in my life so if I focus on others problems maybe I can calm down a bit too. So thanks for letting me be apart of this group and please don't let me being in the medical profession worry you ,I'm not here to judge,tell on you or anything like that ,I'm here to learn and offer what support I can When I post from my inbox I have some links in my sig tag if they are unacceptable please just let me know and I'll use a different signature thank you Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Welcome Heidi, I'm glad you're here . Heidi is indeed a close friend of mine - so close in fact that I file her emails in my " Family " folder - lol. She gets to listen to me talk about my mom both on the phone and in emails, lucky girl . His, Sherry www.owly.net daughter of , (mis?)diagnosed with AD in 2005, descent slowed by Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my house. We're learning to live with Lewy... ----- Original Message ----- > I am a close friend of Sherry's and she has been letting me know how > things are going with her mom so I asked if she thought I could join > the group as well.I am an LPN currently working in pediatric home > care , have had years working in nursing homes both as a certified > aide and as a liscenced nurse.There is a possibility that I my go > back to geriatric nursing in the future and thought it would be a > good thing to be up to date as it were on diseases, etc of the > elderly.For the most part I'll probably be a lurker at least for a > bit,working nights and dealing with fibromyalgia sometimes all I do > is get my emails and skim them til I have time to read,lately I have > had alot of stress in my life so if I focus on others problems maybe > I can calm down a bit too. > So thanks for letting me be apart of this group and please don't let > me being in the medical profession worry you ,I'm not here to > judge,tell on you or anything like that ,I'm here to learn and offer > what support I can Quote Link to comment Share on other sites More sharing options...
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