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More Stories - Page 2


I was diagnosed three years ago with Lupus, Sjogrens syndrome, and a rheumatiod overlap. I am 47 years old and have one married son 27. I just had gotten my son out of college and was going to finally have some time to do a little of the things I wanted to do. Have been single for 14 years and have worked hard to raise my son. I have been a nurse for 20 years and really love my work. God has been good to me. I am still able to work, just not as much as I want to. I had to take almost 4 months off work when first diagnosed and a few short leaves since then. I take Prednisone, Plaquenil, Celebrex, and Dyazide. Sed rate stays between 35 and 45.

I live in a small university town of about 15,000 in Mississippi. I am originally from, Mo. I move back here because this was where my son wanted to attend college and my parents are now living here.

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    My name is Tyra, I'm 21 years old and I live in Milwaukee, Wisconsin In 1996 when I was in my second year in college when I started losing weight for no reason, I was being to feel run down and tired all the time, and I just blamed it on stress, and being over worked.  It got to the point where I was sleeping through my classes so I had to choice but to leave school. After several months and several doctor visits I was finally diagnosed with autoimmune hepatitis. At the end of 1998 I was put on the liver transplant list.
   Since being diagnosed I've had to change my entire lifestyle. The life of a typical 21 year old is not a life that I am accustomed to I've had so many people tell me that it's unfortunate that I am going through so much at such a young age.  And as strange as it sounds it has almost been a blessing to me ... I appreciate my family and friends so much more now than I ever did. And I try to live each and every day to the fullest.

(Webmaster note:  Tyra has since had her transplant and, having overcoming some complications, she is doing much better.)

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My name is Jennie. I am 27 years old, and I am just becoming accustomed to my life. I have been sick from the age of 10 to the present. I was diagnosed with Multiple Sclerosis at the age of 15. I had spinal taps, cat scans, MRI, x-rays. I thought I was ready to tell the people what the inside of the machines looked like, and also the painful tests. I was told I had a demylinating disease. OK, and I was supposed to understand that. The only thing I knew was I couldn't control my left side. To make a long story short, I was up and walking from ages 15 to 17 1/2.

When I was 17 1/2, my world did a major flip flop. I was in a manual w/c, and I was looking forward to graduation and prom. I was in the hospital when prom came up. I decided I was going( long fight with doc), but I went. I was able to talk some for my prom, but I had great difficulties. I made it to graduation, and then life got tougher. I spent my whole summer in the hospital. I was released, and two days later I started college. I spent my 19th birthday in the hospital. I saw the inside of an MRI machine because I had a grand mal seizure on my birthday. One minute I remember talking with a nurse, and then I remember waking up two days later. I flipped them out when I had a MRI. I had another two grand mals in the machine. I got over that problem, but was met with another one.

In 1990, I had a G-tube (feeding tube) placed, I was crushed, but losing 20 pounds in 14 days was not a good idea. I was in the hospital for months this time. I wanted to be home so bad, but I was going back and forth between ICU. Something else was going on, but what?

In 1995, I was diagnosed with myasthenia gravis (rare neuromuscular disease). I had a surgery to remove the thymus (have no idea why). I was having lots of problems, but I was going to make it. I am using w/c off and on at this time. 1996 was full of visiting "club med". I became very well known in ICU. I lost my Daddy to cancer in September of 1997, and from June 1997 to Jan 1999 I have been hospitalized like clock work. In June of 1997, I was diagnosed with CIP( chronic intestinal pseudo obstruction).   My stomach thinks there is a mechanical obstruction, but there isn't, so I gained two more feeding tubes. I was on TPN( total parental nutrition) until I got MRSA in July of 1997, and boy was I sick. I was at hospital by 4am in the morning, and my temp was 103. By 9am, I was in ICU on a ventilator, with a temp of 105. I was so sick, and my daddy came down between chemo sessions. I was in the hospital 3 weeks, and I came home on iv antibiotics ( no signs of infection) for a grand total of 3 days. same scenario, I was back in ICU on a vent with a high temp. The story gets longer with each passing month, so I will spare you the details.

I moved to OKC last January. I came back in crises, and I was in hospital for a month and a half. I was not great, but ok. I was put back on total TPN, and I had many line infections. I found that I loved to swim, but they can't prove staph gets in my blood that way. I also went water skiing, and I got MRSA again. I saw doc after my temp was 102 for 3 days. I knew I had a line infection, but I had no idea which one, so I told him get cultures and call me. Yep, I had line infection, and so I had another trip to hospital. I had 5 lines last year. My docs and i decided that we were going to try me off TPN.  I have made it one month, but if I get the flu, I will be back on in just a few days. I do what I am able now. I am not in w/c, but I tire very easily, and I am just living life to what I can now, but I do things I want or like. I swim, walk, Tae Bo, eat, breathe and roller blade.

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I'm 49 years old, married for the 3rd time, have one each daughter, son-in-law, grandson, and husband -- oh, and dog (you can see her picture on her web page at http://www.geocities.com/HotSprings/Resort/9536/honey.html

I have two sisters, one 47 and the other 38. Looking back on it now, I realize I was abused by my father as a child (in the name of discipline -- beatings with a leather belt -- and we didn't think anything of it because as the children we were we assumed that that was the way all children were treated -- sad, isn't it?), and the horrid pains and cramps I'd get in my legs were shrugged off as "growing pains" (typically, for that era).

I recall that as a child, I never really wanted to run and play like all the other kids, even though my mother says I would never admit to being tired until I dropped from sheer exhaustion. Also, I remember walking along and suddenly having my ankles or knees buckle on me, leaving me in excruciating pain -- another common symptom of this DD.

At the age of 11, after at least 5 years of having strep throat any time it came within 10 miles of town, I had my tonsils removed. Then, the week before Christmas when I'd just turned 12 (Less than 8 weeks after last surgery), I had to have an emergency appendectomy.

At 15, I was working for my doctor for the summer, caring for his children, their home, and his very pregnant wife. I became ill, he diagnosed it as mononucleosis, and promptly fired me -- sending me home to spend the rest of the summer in bed -- doctor's orders. He said he could find someone else to care for his family -- my health was more important.

Since puberty, I've had severe headaches, usually diagnosed as sinus/tension headaches, (but readily treated these days with migraine medications so it causes me to wonder about the accuracy of these diagnoses). I really can't say I've ever had the debilitating periods that some women experience, and for that I'm grateful.

When I was 19, I had my first experience with recurrent pain -- a sacro-iliac sprain upon lifting something I shouldn't have been lifting. I was enlisted in the U.S. Army and had married (the first one) and become pregnant. For the reason that my cycles were very regular, I knew instantly that I was pregnant and had gone to the doctor to have it confirmed, but at that time 4 weeks was too soon to tell, so they wouldn't confirm and I had to continue normal duties. At about six weeks, one night, I woke up drenched in blood and there was no stopping the bleeding -- I miscarried and was discharged for the Army soon thereafter. But that did not stop the recurrent pain in my back.

A couple of years later, I married again and became pregnant with my daughter. She was at least 2 weeks late, but the first 9 months I carried her were the best months of my life to that time, physically. I was lucky (or maybe it was the FMS - no one knows that for sure) enough to have no morning sickness, I walked sizable distances every day after I completely quit working in my 6th month, and felt wonderful! Had a HORRIBLE labor & delivery, though, but that's another story, which I see no point in telling here.

After I left her father and married my current hubby, and we were living in Phoenix, I started to have terrible gastric problems. I was dx'd with hiatal hernia and later found to have a very diseased gall bladder, which was removed.

It was during that time that I first began to notice frequent, if not constant, pain in and around my joints. Nothing was done about it until a couple of years later, after we moved to where we are now. In 1985, I was working on a job where I did a lot of writing and worked a great number of hours (sometimes as many as 60 or more per week). The job paid very well, but carried with it a lot of stress. I went to the Dr. and after a while he dx'd as first Carpal Tunnel Syndrome (most of the serious problems at that time were in my hands), then a little later as fibrositis (the most recent "old" name for FMS).

I've been treated now by three docs for it, only one of whom was a Rhuemy. The one who made the dx was a GP and when I changed insurance carriers I found an internist who's also a Rheumy to be my primary. He was great, and we found a treatment of Elavil and various NSAIDs to work for a long time. Then about 2 years ago, I felt horrible and he ran a series of liver enzyme tests which showed greatly elevated enzymes, so I discontinued taking the Voltaren (the one I was on at the time, and it really wasn't doing a great deal for the pain anyway). I've also used Naprosyn (before it went OTC) and had to take Zantac to stop it from tearing me a new ulcer; also used Clinoril. None of them worked for any length of time. I suppose that's logical, since FMS is NOT an inflammatory disorder.

A year ago, we lost our insurance again, and started using a local clinic which charges based upon income. At that place, I see an internist/GP who knows more about FMS now than he did a year ago. I educated him. I came on the 'net and found a bunch of information for him. I asked him if he had a problem treating an educated patient, and he said no, that he wished he had more who took an interest beyond "give me a pill to get rid of this" in their health. I had with me a list of things I'd used and the relative values of them to me. He decided I truly knew more about it than he did, so he gave me scripts and sent me on my way, saying he'd read what I'd brought him. I could only hope I wouldn't offend him with the literature. Luckily, I didn't. It was only on the next visit that he did a truly complete exam.

Last fall (1997), on top of the FMS, I had a breast cancer scare. I endured hours of testing and a surgical biopsy when the needle aspiration biopsy was inconclusive. I learned that I have lobular carcinoma in situ, a "marker for increased risk of developing cancer". Just what I needed!!!

The end of March (1998), at my hubby's suggestion/insistence and for the other reasons I've listed, I decided to take a holiday from all my rx meds because 1. I couldn't afford to have them refilled at that moment, and 2. I wanted to see if I could eliminate the side-effects I was having. That worked wonders, and I still feel pretty well most of the time. I am currently using several supplements as well as vitamins and minerals. The list of those is on another page.

Since I wrote this page, my story has taken another turn. Just before Christmas, 1998, I realized (by reasons not truly part of this story) that the depression augmented by this disease was overtaking my life and that I was in desperate, immediate need of psychological help. I was on the verge of a breakdown, and took some time off to spend with a psychologist friend who spent many long hours with me and within a short time felt that I was well on my way to healing -- and had regained the strength to do so. I cannot thank her enough -- she may well have saved my life!!! I wrote this paragraph to encourage anyone who is reading this to GET HELP if you're even wondering whether or not you need it.

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I'm Bruce, 67, retired. 18 months ago I couldn't spell WG (Wegener's Granulomatosis),  but now I am one. God has been good to me for my case was diagnosed early with no lasting damage except maybe some peripheral neuropathy.

As with most autoimmune diseases, the great danger is in the delay between onset of symptoms and the start of treatment. I was lucky.. only 3 months.

WG usually starts in the upper respiratory, but can start virtually anywhere. If it starts in the lungs, it can be asymptomatic for a long time. I had a 2 cm nodule in rt. lung which didn't show up on x-ray, but did on ct-scan. WG causes vasculitis which can strike anywhere but particularly likes kidneys where it can be asymptomatic  for a long time.

I was on prednisone and bactrim DS. The prednisone was tapered down in about 11 months. I'll be on bactrim for about a year, or maybe continuously. 

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I am Kerri, and new to the list. I am 27, and I was dxs with Myasthenia Gravis when I was 24, 5-96. I joined the other Mg mail list back in July of 98, and I love it. It was the first time I had ever communicated with others with my disease. Like I said, I am 27, I have 3 small kids and I am married. Before I got sick I was really active, worked a full time job as a Reg. Dental Assistant. Now, I am on SS. Thank god for that. It really helps too. Hubby is great. He has been really wonderful through this whole ordeal. Family is really supportive also.
I also maintain my house hold. If it weren't for me nothing would get done.
Thymectomy 1-97 Meds Mestinon 60mg 3-4 tabs a day Imuran 100mgs a day Prednisone ( Been off for a week) lets hope I can stay off of it.. 

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I live in L.A. Ca. with my 11 year old son Charles.

I've been reading the list for a couple of days now.  I am not even sure if I am on the right list.  I haven't been diagnosed yet.  My doctor believes I have ITP, (Idiopathic Thrombocytopenic Purpura) which is short for a big huge long name meaning my platelets are low.  All I have really found out about this is that it has something to do with my body being confused and thinking my platelets are some sort of bacteria or infection so it kills them off.

I will be seeing a hematologist on the 8th of April then my regular doctor on the 14th. I guess the other thing I can say or at least how this is effecting me. This causes me to bruise very easily and bleed for some time on the littlest of cuts.  I am also extremely tired and also depressed.  But from what I also understand that is what accompanies this ITP.  Also I just found out about this in August of 97.I don't mean for this to sound like a whine just thought I should explain what I have and how I am feeling.  I am very thankful that at least I am alive, have a wonderful family, great friends and a very wonderful boyfriend.

Also I am sorry if this skips around and is confusing.  I don't know if this has anything to do with anything but lately I have been confused and it is hard to keep track of my thoughts and make them fall in order. 

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 I am 30 years old and I live in Canada. I have been diagnosed with Hashimoto's Thyroiditis, the docs also suspect autoimmune ovarian failure and some kind of autoimmune syndrome. I am currently being investigated for other autoimmune conditions, especially hormonal.

I also have been diagnosed with pituitary-hypothallamus dysfunction, osteopenia with rapid bone loss (despite treatment), bone degeneration in my spine, chronic joint, back and bone pains, chronic fatigue, infertility, allergies, asthma, GERDS and numerous other medical problems requiring 8 surgeries to date. By the Grace of GOD I have been well enough to work part-time, and have been blessed with a wonderful, loving husband of 9 years. My health problems started 13 years ago and have progressively gotten worse until a year ago.

Last year my health got to the point where I had to quit working and volunteering altogether. In the last year I have lost 20 lbs and have become so easily fatigued, that I can't do more than a few hours of housework on a good day. Even then it takes days for me to recouperate.  I know from lurking on the list that you can all relate to the fatigue, the daily frustrations of coping with new limitations, and numerous complicated health problems.

I am looking for your experience and advice, in dealing with chronic pain and fatigue, autoimmune syndromes (esp. hormonal, bone and neurological). Any info or web sites would be appreciated. I am also fairly comfortable reading medical journals and research, as I am a nurse, Emergency Medical Responder and a volunteer firefighter (when I'm up to it.)

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