Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Dear Group: I am new to the group and have been lurking for a few days and wanted to introduce myself. I have CFS for many, many years and it is so severe that it has destroyed whatever life I would have had. Some of us do better than others and this is so with every illness. When I was diagnosed in 1993 by one of the top immunologists in my city, I had already diagnosed myself and if I didn't, I never would have been diagnosed. I have almost every symptom I could have and am, for the most part, homebound. I developed CFS with a sudden onset of a very bad flu-like illness with 106 degree temperature and other common symptoms to the sudden onset of CFS. As the years passed and sickness overwhelmed me, I developed asthma after a very serious pneumonia and then diabetes. I have had IBS since the beginning of my illness along with panic attacks which are much more under control now and migraines brought on by sleep disorders. Migraines run in my family so I didn't have much of a chance escaping them. About 4-5 years ago I developed severe pain in my lower back, hips and thighs. I am so thankful that I was under the treatment of a neurologist for my migraines and when the pain became intolerable, my internist suggested I see a neurologist. He would not treat me. Since I already had a wonderful neurologist that I trusted, I immediately went to see her. She put me on Oxycontin and I did get relief but not enough from my dosage. For a second opinion, I went to a very well known pain specialist for a consultation. He gave me a very depressing, bleak outlook for the future. He believes that I will eventually be wheelchair bound but he doesn't know me that well and he also didn't think I had the actual symptoms of Fibromyalgia but I do have the symptoms I read about and for lack of a better diagnosis it fits. Anyway, he didn't know me well or my history and I was more interested in pain treatment for today. He knew my neurologist and suggested that I stay on Oxycontin but that she increase the dosage until I find relief. Because my neurologist knew the pain specialist, she also had faith in his recommendation and she increased the Oxycontin dosage until I reached a high dosage and found relief. I never felt any effects such as feeling high. I do not feel that I am even on anything. It does relieve my pain. But then there are all the other symptoms to cause me suffering mainly my sleep disorders. I did go to a sleep clinic but my medication is not working the same anymore and I am sleeping constantly anyway but have terrible nightmares every day. I believe that CFS and Fibro are one and the same. Of course, we all have different feelings about what they are and no one really knows. Because of the way it hit me I believe it is one syndrome. I have been through alot over many years and know I am not the only one but I have found ways to make my life easier and hope I can help others to do the same. My main problem is naturally housework and I have a wonderful cleaning woman who also goes shopping for me. I live with my beloved cat who was recently diagnosed with CRF (Chronic Renal Failure) and although it will eventually be fatal, I give her treatments and medication every day making life harder but I love her so dearly and since this is keeping her feeling good, and she can live for years this way, it is a necessity. I have since changed internists from one who did nothing for me to a cardiologist/internist who took care of my father before he died and still cares for my mother. I have not found one doctor who is reliable and understanding but I do feel this doctor is better for me because it is a practice of 3 doctors, my doctor being the top doctor in charge, and there is always a doctor there in an emergency plus they belong to the best hospital in my area and the only hospital I would consider if I needed one. This past year I had to call 911 for my asthma. This doctor found that I was retaining alot of fluid in my lungs and retested me with an echocardigram and a stress test which came out clear. So he is keeping me on diuretics and my asthma is better. Thank you for reading my introduction. Andi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 Hi Carolyn, I am , living in Sydney with my husband and our kids 5 NT and 2 ASD. Welcome, this is a great group and a wonderful support. I do not post too much. I am having enough trouble keeping up with the volume of posts let alone sending my own. lol. Take care, Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 Hi Carolyn, I am , living in Sydney with my husband and our kids 5 NT and 2 ASD. Welcome, this is a great group and a wonderful support. I do not post too much. I am having enough trouble keeping up with the volume of posts let alone sending my own. lol. Take care, Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 No house plants. One of two things happen to them. If I don't kill them first the cats eat them. brought me home roses once and one of the stupid cats that live here decided to eat them and I told my husband " Thank you for the cat salad " He hasn't bought me roses since. (I thought it was a funny comment and I was trying to be funny) No one has called me a special kind of weirdo before. I feel honored. Georga Hackworth Men, can't live with them, can't trade them in for their weight in chocolate. April is Autism Awareness Month! Enter to win $50 in free books at www.ubah.com/F1549 RE: Introduction > Did I ever tell you that you are a special kind of weirdo? ;-) > > You realize don't you that with you, your dh, your roommate (?), the kids > and the animals, that adds up to: > > 34 Living Beings in your home???? Not counting house plants? > > YIKES! :-D > > > Penny > > >>>>>>> > Well, now I am going to scare you. I have seven children. 5 girls, 2 > boys...the oldest is 9, the youngest is 2...... > .....and live in a zoo of 9 cats, > 10 gerbils, 9 guinea pigs, 1 ferret, 1 iguana, 2 turtles and 1 weiner dog > puppy. > > Georga Hackworth > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 > How do you have a few more than me? > I didn't realize you lived in a zoo...or do you have house plants? > Of course if I add in Enrique's spiders... Salli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 > How do you have a few more than me? > I didn't realize you lived in a zoo...or do you have house plants? > Of course if I add in Enrique's spiders... Salli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 > How do you have a few more than me? > I didn't realize you lived in a zoo...or do you have house plants? > Of course if I add in Enrique's spiders... Salli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi Shellie, Congrats on your pregnancy. Well, I got pregnant at only 7 weeks post-op unexpectedly and both my son and I did great. Your surgeon shouldn't be chastising you, you don't need that right now. I tried very hard to eat a great diet while pregnant, unfortuantely horrible morning sickness wouldn't allow that. I did have horrible morning sickness in my pre-op pregnancy as well. I would stay on my vitamin regimin, but I would call the OB's office and ask to talk to a nurse regarding taking the Prevacid. I don't know much about that med. Most post-ops don't see a high-risk OB, although I did as I have Epilepsy. If you have anymore questions I would be happy to answer if I can. By the way, my baby was born a day after you had your surgery this year on the 16th! Congrats! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi Shellie, Congrats on your pregnancy. Well, I got pregnant at only 7 weeks post-op unexpectedly and both my son and I did great. Your surgeon shouldn't be chastising you, you don't need that right now. I tried very hard to eat a great diet while pregnant, unfortuantely horrible morning sickness wouldn't allow that. I did have horrible morning sickness in my pre-op pregnancy as well. I would stay on my vitamin regimin, but I would call the OB's office and ask to talk to a nurse regarding taking the Prevacid. I don't know much about that med. Most post-ops don't see a high-risk OB, although I did as I have Epilepsy. If you have anymore questions I would be happy to answer if I can. By the way, my baby was born a day after you had your surgery this year on the 16th! Congrats! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Hi , I was thrown this curveball a year ago when i was 25. Being in what i thought was perfect health i assumed the upper quadrant pain attacks i was having at work were just due to something i was eating but when they didn't go away and i started having chills I knew something more was wrong. LFT's through the roof had me in the hospital and after an ERCP and two months of the fine Canadian health system taking forever to read me my diagnosis (yeah left that out of his movies) I knew about PSC. Personally, I am just enjoying the time I have that I am in good health and I suggest you recommend to your daughter the same and try and foster this. It's strange, moving out made me even closer to my parents and this condition has further strengthened our relationship. I don't take for granted morning phonecalls on the way to work, weekend golf games or even just a meal together. I wish you and your daughter all the best and if she ever wants to discuss the condition with another 20-something I'm more than happy to do so. All the best, dx PSC 07.07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2008 Report Share Posted August 24, 2008 Hi all: I am new to the group and diagnosed with PSC in 2006. I am currently 44 years old. Though I was diagnosed in 2006, my alk-phos levels were noticeably elevated in 2000, after gall bladder removal, they improved slightly but then began a slow increase. Finally in 2006, an ERCP was performed that confirmed. Since then I've been on Ursodiol and the counts decreased and have so far remained stable. So far, I have shown no symptoms of the disease other than elevated enzymes. I currently do not go to a hepatologist (is that the correct term?) but now have a referral for one and will go soon. I also suffer from crohn's disease, but that has been in remission for eight years. I seem to have a wide range of emotions where I do my normal doctor visits, but carry on as nothing is wrong. Those are the days where I don't think of it at all. Then I have days where it's in the back of my mind and days where it's the only thing on my mind. Those days usually coincide with mild depression. I've read everything I can get my hands on and it all pretty much points to the same thing, but I also know that the disease progresses differently with individuals. I'm just happy to find a place where people can relate. Quote Link to comment Share on other sites More sharing options...
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