Tired of being sick and tired, need a dx

Tired of being sick and tired, need a dx

Posted In: 5 Replies
  • Posted By: Adisney990
  • February 16, 2007
  • 06:05 PM

I've had various symptoms of lupus over the years but not enough at once to alert any doctors. However, about a month ago I noticed my throat began to hurt. This went on for a few weeks ranging from severe to mild but I treated it with motrin and ignored it. Well last week I woke up with a rash on my face. It wasn't as defined as the malar rash, it was in the middle of my forehead down my nose around my mouth and also on my chin and neck. I've also noticed what looks like zits on my temporal lobes but it's not acne at all. I've always had clear skin so when I get zit like bumps on my face that last for a month I tend to notice. The fatigue is unreal. I chalked it up to lack of sleep, but after getting caught up again I still find myself dragging and that's not normal either. The pain and swelling in my joins is too annoying and sometimes hurts so badly that I cry. I'll wake up in the middle of the night and try to extend my leg and it's completely stiff just moving it kills me. Or I'm walking around the office and my hips hurt. But my jaw swelling up to the point that I can't eat can't be ignored. Then comes the nose and mouth ulcers. Now I just wish someone would just shoot me. From what I've read the ulcers aren't supposed to hurt but they do. Moving right along to the fevers. I wear a heavy coat all day because the chills are so bad and eveyone else thinks I'm crazy. And last but not least the leg swelling, sometimes they swell up so big it hurts to cross them. So finally I told my doctor to do an ANA which of course came back positive. It was speckled and the titer was only 1:80. I did the DNA test today and I'll get that back next week. I just need to know with all the crap I've got is there anything else that this could be other than lupus? My Rheumatoid factor came back negative. I'm really worried and scared and if anyone knows of anything that fits these symptoms and it's lupus please let me know. Thanks

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  • I hear you, I am you, according to your symptoms. I know how hard it is to get a grip when you feel besieged by dragons. First step is to use your energy to insist you will be heard and you will be healed. Period. Keep that close at all times. First, ANA positive is your biggest clue. Before all your serology iscomplete it's a crapshoot to say it's this or that. And guees what? It may be a mix oof one, two, or three auto-immune disorders. They tend to want to group together, AKA mixed connective tissue disease. When I had my first 'known' flare ( I had symptoms thru my childhoold and adolescence that were overlooked, ignored, or we/I were just ignorant of what the total picture was) 15 years ago I was just about bedridden with leg (knee) pain and swelling so acute I was bedridden and could only go up and down stairs on my butt with an apron holding what I needed to carry with me to and fro. Not a single Dr. knew what was going on with me. All x-rays were neg, ana was neg, lymes disease was neg, but, I had a PERFECT butterfly rash on my upper breast. And I do mean perfect, inverted hearts and red as a poker tip. Did not itch, did not hurt, it was just there. This made every Dr. scratch their head in wonderment. It was SUPPOSED to be on my face, not my breast. It wasn't diffused it was the perfect size and shape of a butterfly. I wish now I had taken photos. This went on for almost two years and then poof,everything went away. If you don't count the bizarre of symptoms that came and went over the next several years. Being an ex nurse, I self medicated and dx'd to side step the system which wasn't of much help anyhow. In the years that followed I had arthritic flares, gastro and bowel problems, nasal and mouth ulcers that came and went, all sorts of 'inflammatory' stuff that didn't amount to much on their own merit. All came and went and I just went on with life. I felt fairly healthy, with these bouts of troublesome things, but nothing that put me down and out again. 15 years passed, then bam. I got a rash on my arms and back of my hands that persisted past a vacation in the Nevada desert. My primary thot maybe a spider bite and infection perhaps...course of anti's. It spread to my chest...on to the dermatologist. He thot maybe lymes or lupus, and I immediately nay'd his thots. I already went thru this 15 years ago Doc, no pos ANA. I 'knew' it was Lupus back in '79, I knew it when he said it in '95, I didn't want to believe it tho. I tested positive that time, and my condition went chronic off the meter. I progessed from dermatologist to dermatologist, being treated for psoriasis mainly. Eventually I was covered head to toe with spots, dots, blotches and lesions. Soles of my feet and palms of my hand were even covered. I wanted to die to be honest, I've never seen anyone look and itch like I was. I felt and looked like someone dropped me into a hornet's nest, on a daily basis. I went from Rhumie to Rhumie, and I was a pain in every one of their butt's. I was smart enuff to follow every move they made, my research was better than theirs most of the time, and nothing seemed to be stopping the progression of what was finally diagnosed as SCLE. I also has SS (Sjorgen's Sydrome) which sucks all the moisture out of my nose, mouth and any other mucous membrane I have. It's not unusual to have SS along with the Lupus I learned. I had lived with all those symptoms my entire life and never realized everyone else didn't have them as well. It's bizarre what we accept as 'normal' when we don't know anything different. A biopsy was finally taken and treatment begun. Treatment for the SS is the same treatment as Lupus, immune suppresors. Nothing was working, not even the steroids. All they served to do was to make me hungry, angry and emotional. I wanted to die even more then. I can't say I was planning my funeral, but I wanted to be planning my funeral. I wanted answers and I wanted some compassionate treatment. The only place on my entire body that wasn't swelled, irritated and itchy was my face. If you covered me with clothing I looked very normal. After nine months of flaring out of control, bouncing from one specialist to another and feeling as if I was falling thru the cracks, I started to remit on my own. Even my favorite Dr. (the one who finally did the Bx. and got the Dx. correct) could not figure out why I began to remit and clear. I had been taken off the steroids, I was psychotic w/o any benefit so it was clear they were not working. We'd save them for life-saving if the Lupus went to a major organ. None of the first line drug therapies were working, second line wasn't looking too good either then poof...as I said, I started to remit. For the next 5 years I went 'in and out' of flares, some milder than others, but none of them got as bad as the initial that lasted almost two years. Manageable is about the best I can describe. At one time I had big round lesions under my nipples, it looked as if I had 4 nipples from a distance. Just bizarre lesions here and there, with a general red look to the rest of my upper torso at all times. Then my primary Dr. of over 25 years announced she was moving to Texas...oh no, she can't!! She was my saving grace in all this lunacy, when all the other 'specialist and therapies and whatever' got overwhelming I'd go cry on her shoulder and let her sort it out with me. She sold her practice to a very nice Dr. who I also liked and felt I could gain some understanding and help/advice when needed. She wasn't as comfy as I was tho. She flat out told me she would be glad to be my Dr. and help me cope with the Lupus as best she could. But she felt inadequate to handle my disorder as well as I was, so she 'made' me promise to make an appt. with either the University of Md, Johns Hopkins Hospital, or the Mayo Clinic. Pick one. Simple as that. Hmmm....Ok, I picked Hopkins. I had done my homework and I had followed Dr. Michelle Petri's work for the last 5 years via the net, papers, clinical trial reviews, blah, blah. I live close and my Dr. did the referral paperwork to be seen. Dr. Petri agreed to see me. She only sees 300 patients a year, as she also does clinical research and teaches. Her time is split and you have to have a definite Dx. to get by the gargoyles at the gate sorta kinda. She Dx. me as SCLE as an initiating Dx., but I had it to such a severe level intially that it spilled over into general SLE by the blood work's analysis. I knew that. I have way too many serological manifestations for it to have stayed at the SCLE level. The good thing is my chances of it going into nephritis or heart/lung involvement was slimmer than others perhaps. Oh goody, I guess.OK, here is the kicker for all that have stuck with me telling my story thing long. BTW, this is the first time I've penned my story for any board or forum. On my 2nd visit with Dr. Petri she offered me entrance into a clinical trial of a drug that is targeted at the paticular type of manifestations I have. Mainly skin. I do have arthritis, chronic fatigue, mouth and nose ulcers and some major brain fog at times, but it's the skin stuff that is my major problem. Dr. Petri Dx.'d me as 'exquisitely' photo-sensitive. So much so I can't sit in front of any TV or monitor that ISN'T flat screen, anything with a bulging back to the monitor emits too much light. No flourescent light blulbs, no sunlight at all. That means I cannot go out until after 3 pm, and then only with the heaviest of sunscreen, all year round. And no office machinery such as copiers and pc screens. Okey Dokey, just be a bat and sit at home....good grief!!!!!! Anyhow, as you can see, I was fairly desperate to live like normal people and not be covered with spots and dots all the time. So I took the paperwork on the drug, Medi-545 is the name so far, and thot about it. Then I pondered it some more. This was phase 1. That meant not a single human had given it a go just yet. Oh my.....only mice that were forcefully induced into Lupus activity on purpose were tested so far. I did as much research as I could find, then I tried to forget about it.I was too busy. I had a vacation to Vegas planned that month, my son was getting Married the following month, and then I was going to Hawaii with my best girl friend for two weeks the month after that. So who had time to be a lab rat? They wanted a 4 month commitment from me. The first couple of weeks meant a short overnight admittance, then a trip into the city everyday for follow-ups....I found lots of reasons to keep pondering and not deciding to go for it. After many phone calls from who became by Dr. StudyBuddy, who in reality is the Dr. who does the clinical co-ordination, I finally relented on being a guinea pig. But not until November. It was putting it off more than deciding to do the study. Fear was making it easy to back burner and get on with the fun of two vacations and my son's wedding (which was beautiful BTW). My gut kept telling me it was OK, my mind kept telling me the year before a few people died doing a similair study on auto immune antibody research infusions. In the year between that study and this one new protocols were set up for infusion studies. Okey, Dokey....ennnie meenie minnie moe....just as I was about to back out for good, the phone in my hand to call Hopkins, my Dr. StudyBuddy rang the phone. Hmmm....I was so surprised they called as I was calling them, when she asked if I was still a go for the study I said yes instead of no. When I hung up I wasn't sure why I did that, but then I felt too silly to call her back and say I meant to say no.
    Anonymous 42789 Replies
    • February 19, 2007
    • 09:49 PM
    • 0
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  • con't...from pervious posting...The day before I was to be admitted an absolute calm descended upon me. Like grace is all I can explain it. Every fear I had went poof. I went alone, I didn't want family or my husband staring at me while I watched TV or read. I was fine, just being infused with what might be sugar water, so relax already. My mother, who goes to every Dr. appt. with me was down with the flu, go figure. Perfect. The infusion went perfect, I didn't blow up immediately like a balloon, my vitals remained perfect. My BP even was normal the entire time, not once did it spike. Very unusual for me. I was smiling and extemely calm, the grace stuck like glue. I was fine on discharge, and remained that way for the next 48 hours. 72 hours into the infusion trial I started to clear!!! I saw it, nobody else could see the lesions fading just yet, but I did.I got the real stuff and it was working!! I was not only stunned, I was in absolute disbelief. I have been spotted and dotted, usually from head to toe, for over five years and I was clearing. Sometimes I would clear on my arms, only to have the lesions show up on my back, breast or legs. They seemed to move around my body, but never faded out all at the same time. Never, ever did I experience this kind of clearing. It was different and I knew it was the infusion working my it's different way of clearing. It is hard to explain. Anyhow, the clearing continued until the last lesion turned pink and dried up and eventually just faded away completely. It's been over two months since the last stubborn lesion faded. Not a single lesion has returned, not anywhere. Photos were taken daily, then weekly to document the progression of what I consider a complete remission of the skin part of my Lupus.The arthritis and the nasal/mouth lesions remain, as well as the chronic fatigue. My hair has stopped falling out tho. I think the lesions on my scalp were making the hair follicles inflamed (inflammation is inflammation is inflammation, wherever it may be) and the hair would fall out at the root and the other hairs would not get nourished and would break willy nilly all over. I had classic "Lupey Head" if you know what that looks like. There is now no hair clogging every shower and bathtub drain in the house, nor is my hair brushes full of hair any longer. Even the vaccum cleaner beater brush got clogged with my long hair twisted around it. Ugghhh....looking back I don't know how I kept plugging just acting like it wasn't all that bad....So the medi-545 has not only stopped the skin flares, it has also given me back my hair. The entire quality of my skin is better. If I get a knick or scrape, bruise or whatever, it heals lots faster. So that's my story. Have faith, hold on, don't take no for an answer, follow your gut, keep copies of your Dr. notes and especially your labs and carry them with you from specialist to specialist. Don't count on staff to get them from one to the other for you, as promised. Often they won't get there and when you appear for your appointment, hoping the specialist will give you some answers, he or she doesn't even have the labs or test results on the mri or whatever to intelligently discuss your case. Call ahead and make sure they have rec'd. your notes and test BEFORE you get there. If not, ask them to track them NOW, not later once you are standing there in front of them. BE PROACTIVE. Take your frustration and anger, and use it for your good. Do as much research as you can. Fire Dr.'s when necessary, it's your money, even if insurance if paying. It's still your money and you are hiring them to help you, not confuse you, or make you feel nuts because you are sick and feeling like crap and they can't figure you out. I refuse to pay for abuse, even from people in white coats. I used to wear a white coat too, and it never gave me a license to abuse my patients.I hope some of this helps. Hang on. There are many drugs on the cusp of being marketed. My drug is going into phase II right now, they are recruiting as I type I believe. There has not been a new drug for Lupus in over 40 years if you can wrap your brain around that one. 40 YEARS!!! There are hundreds of cancer drugs being developed just this year alone, that is horribly inadequate, and the major reason I decided to go for the trial study. On March 1st I will be going to Washington DC with the Lupus Foundatoin and other volunteers, to speak with the lawmakers to gain more funding for Lupus. I'm going to take my voice, my story, and my photos. Trust me, they will be horrified. And I will be willing to strip down and show them what a drug did for me and what others, like you, deserve. Right now, today, would be a good day to be healed. I'm not going to go back over this and edit it for typos or grammer, I'm afraid I won't send it and I'll hit delete instead. I think others need to hear there is hope tho. For many years I didn't think I had any hope at all, just endurance to nowhere in paticular, just survival.Peace and healing,DeborahRealitychk@aol.com
    Anonymous 42789 Replies
    • February 19, 2007
    • 09:52 PM
    • 0
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  • Now I'm even more depressed!!! The DS anti DNA came back negative so the doctor is saying it's not lupus, but can't tell me what's wrong with me. Does anyone have a clue? Please help!!!
    Adisney990 2 Replies Flag this Response
  • Finally went to see a doctor with half a brain, and he said it was a clear dx of lupus. Hope my story helps others.
    Adisney990 2 Replies Flag this Response
  • Just recently helped someone with Lupus, with a natural product that has no side affects. dfarrish@starband.net
    dfarrish 34 Replies Flag this Response
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