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Thread: Lost and Confused and getting progressively worse.....

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    Question Lost and Confused and getting progressively worse.....

    I am hoping to gain some sort of piece of mind in joining this forum.....
    I'll start from the beginning...
    I am 25 years old. A few years ago I started to have some pretty painful back pain that came and went on a whim, without reason or cause. I had an MRI which only showed Bursitis of the lower spine.
    During that time, I began to get sick, ALL THE TIME. I had pluerisy, walking pnemonia, constant kidney infections, a consistent sinus infection, fatigue, joint pain, muscle pain, migraines, unexplained fevers, and back pain. My hair started to thin, and after being a sunworshiper for years, I started to breakout in hives after less than an hour in the sun. I would break out in full body rashes for no reason. I have lost 13 pounds in the last few years, which I can't afford because my weight is now 99-103lbs. max. It became hard to do basic daily activities, like going to the store, or walking the dog. I would push myself to work, come home, and sleep for 12 hours, rest for the rest of the day until I went to work, and came home and did the same.
    My mother is an RN, and spoke with an internalist who recommended I have ANA test done, he said my symptoms match those of lupus.
    I had a full physical, EKG, Full blood panel with ANA testing, etc.
    Everything came back pretty normal with the exception of 2 things. I had a positive ANA, and I came back with an abnormal pap. I was referred to a rheumatologist and had further ANA testing done. My first test came up with a ANA titer of 1-320. This Dr told me I was a definite positive for lupus, and was quick to start me on plaquinel. I decided to go for a second opinion. But, during this I had to have a biopsy done on my cervix, and was occupied with those issues. My biopsy came back positive pre-cancer cells and so I went ahead and had a colposcopy done. After which those pathology reports came back with positive Carcinoma In-Situ cells, that were non-invasive. I was completely crushed. I also lost my job and was under an immense amount of stress. During these few months time, I went from being sick, but still being able to push myself thru the pain and fatigue to function, to, - not being able to get out of bed, or walk up the stairs. I would run a constant fever daily of 99.9-100.2. My back pain went from a 5 to a 10 and sky rocketed off the charts. I also started to have very painful nerve pain down my arm from my elbow to my wrist, the said it was from work, but it started in the other arm recently as well. I would stand to go to the bathroom, and fall to the floor sobbing in pain. I can barely make it up the stairs without resting in the mornings.
    I had a second MRI done, 2 actually, one on my lumber spine, and another on my pelvis. Lumber spine came back negative despite my chronic debilitating pain, and the Pelvic MRI came back positive with Polysystic Ovaries. (another thing to add to the infertility list).
    I saw a second rheumatologist recently, he pulled more blood work proclaiming that I had spondyloarthristis, I told him my recent MRI showed nothing of the sort, and i didn't think that was the issue.
    The following week, I saw another rheumatologist, he was stumped. He said something was definitely "funky" but he didn't think my symptoms were Lupus related IF i had lupus. He insisted on doing X-rays, and wanted blood work (which i refused) and also referred me to a Neurologist for nerve testing, and wants me to go get a Nuclear Bone Scan. I have already hit my deductable this year, and I am unemployed and drowning in medical bills.
    Today I received my blood results from the 2 rheumatologist. Negative for Spondlyoarthritis. -surprise!
    But I did have a much higher ANA 1-640, speckled. My rheumatoid factor is negative, and everything else is on the low end, or negative.
    I can barely go to target without breaking out in sweats, and my pain is so bad, I am burning thru 90 vicodin a week.
    I am wondering if anyone out there has any answers for me. Is this Lupus? My GP says she doesn't think so. Half of the Dr's I have seen say it's not or they don't know.
    All I know is my symptoms went from 0-60 in less than 5 months, and I am afraid it's only going to get progressively worse if I don't get a definitive answer from someone. The Dr's say my pain is Mechanical and not from Lupus, what does that mean!?!
    I'm loosing my mind and thought I was going crazy for a while because no one believed how much pain I was in.

    Is this LUPUS?
    How does Plaquinel treat most people?
    Can being on Pain meds like Vicodin for a long period of time effect your ANA and make you have Drug induced lupus?
    Any recommendations on how to relieve this God awful pain?
    Will I ever be my normal self again?

    Someone... Anyone....

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Summertime,

    I'm Rob, and I was diagnosed with Systemic Lupus in 2004. After reading your story twice, the things that stand out to me are your symptoms, and your ANA results. I cannot diagnose you of course, so this is only my opinion. It sounds like you have the necessary diagnostic criteria for a Lupus diagnosis. Your symptoms, and the rapid nature of of how your body and system changed reads like my own story. I have, or have in the past, experienced almost all of your symptoms, and although no two cases of SLE are the same, you do have many of the most common symptoms.

    Your diagnostic experience is a bit opposite of what most people go through. Usually, a person has to go through months, even years of being in diagnostic limbo, usually having to get second, third opinions and more before finding a Rheumotologist who actually is on the ball and able to put the pieces of the puzzle together. If you do indeed have Lupus, you are better off knowing sooner than later so you can get started treating and managing it. I'm not surprised that you have had a series of Dr.'s and specialists who simply do not know what is wrong with you. Lupus is very difficult to diagnose, and many health care professionals are terribly misinformed or simply ignorant of the facts in regards to Lupus.

    In regards to drug induced Lupus, here is a link to the Lupus Foundation of America website and info on the drugs most often associated with drug induced Lupus-

    http://www.lupus.org/webmodules/weba...=377&zoneid=18

    To the best of my knowledge, Vicodon has never been associated with drug induced Lupus. In regards to Plaquenil, my experience with it has been very positive. I have been on it for the better part of 6 years, and I have no negative side effects. Most people do well on it, but some do have bad side effects from it.

    It sounds very much like you have SLE in my opinion, but lets see what others here think. We have a really good base of knowledge here, and hopefully, we can help you find the answers you need. Can you be normal again? Well, if you do indeed have SLE, "normal" is something you probably will not find. Can you get back on your feet, start feeling much better, and manage your symptoms? Yes, you certainly can, but it will take time, and proper meds along with various lifestyle changes. Hang in there, and welcome to our group.

    Rob
    Last edited by rob; 02-18-2010 at 06:32 AM.

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    Do you, or does anyone know anything about MS? My dr's are telling me that my pain is too extreme for Lupus and they want to send me to a neurologist to check for MS. I also found online that a blood titer of 1-640/speckaled, can also be cohesive with Multiple Sclerosis.

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    Summertime,
    Rob can help you the most, but I just wanted to pop in here and welcome you to WHL. Keep coming back to vent, chat or ask questions, and keep us updated.
    Gentle Hugs,
    Marla

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Summertime View Post
    Do you, or does anyone know anything about MS? My dr's are telling me that my pain is too extreme for Lupus and they want to send me to a neurologist to check for MS. I also found online that a blood titer of 1-640/speckaled, can also be cohesive with Multiple Sclerosis.
    Hi again,

    My over-achieving multi tasking immune system decided that SLE just wasn't enough, and saw fit to give me MS on top of SLE. Not many people have both thankfully. Overall, I find that the pain caused by MS to be shorter in duration, but more intense than most of the pain I have from SLE. Pain is a pretty subjective thing though. I don't think a Dr. can reliably put a numerical value on what is more painful, and what is not. It's not really a reliable sign of MS versus SLE. As far as the Titer numbers and being in the speckled range, it's not inconsistent with MS, but it is also not a very reliable indicator either. The titer results you have can appear in many different conditions.

    When I got the MS diagnosis, the first test was an MRI. Then various evoked potentials/nerve conduction tests, and finally an analysis of spinal fluid. They added those results over time to my symptoms and their frequency, and came up with the MS diagnosis. One very difficult thing, is that both SLE and MS can have very similar overlapping symptoms, so many people are mis-diagnosed with one or the other. Although many of the symptoms are very similar, and they are both autoimmune disorders,, the pathology and treatment of both diseases is substantially different, so it's crucial that an accurate diagnosis be made.

    I think your Dr.'s suggestion of seeing a Neurologist is something you should consider doing. The neuro will not put you through all those tests right off. He/She will most likely go with an MRI and some simple nerve reaction tests. Nothing to it. If they see something indicating possible MS, then they move forward with more time consuming and invasive tests.

    If I had to choose between the two diseases, for me SLE is the lesser of two evils. I hope you have neither, but something is definitely going on with your health, and you need answers. I know this is all overwhelming right now. If you want to talk more, I'm here every day.

    Rob

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    Question

    Thank you for your helpful responses.
    I agree with you, I think SLE is definitely the lesser of two evils when comparing to MS.
    I made an appt with the Neurologist. Hopefully the EMG and NCT test will shed some light on my situation. The good news is... My lumber spine MRI came up with no abnormal findings. The bad news is MS does run in the genetics of my family. I pretty much had an anxiety attack when my mother told me that. I have read online of very few people having both MS and SLE, but it's still possible. Since your part of that small percentage Rob, I think you should go out and buy a lottery ticket (bad joke.
    I know something is going on with my body, and whatever it is it's getting progressively worse. But discussing it here has helped. I have been prescribed Plaquinel and have not started taking it yet since my diagnosis is not definite. Any thoughts comments or concerns about that specific medication? Does anyone know if I start that medication if it will hinder any test that I need to have further to get a more accurate diagnosis?
    Another major issue I'm running into is actually finding a Doctor (Rheumatologist) I like. If anyone has any suggestions on Dr's in the Los Angeles area that are good, please refer me to them.
    Thanks again.

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    Wow so much of what you have gone through I have also. I am 23 y/o. I too had a precancer spot on my cervix and had it frozen off. I also started on Plaquenil which I love. I, luckily, have had no ill side effects from it and I have had a lot fewer hive break outs and random airway swelling. I've been on it for about a year now, it took a few months to start noticing the changes. My ANA is also 640 and has been for at least 10 years now. It seems like you're under a lot of stress and this could have triggered a flare. I say most GP's don't know a lot about autoimmune diseases and I say you should stick to going to rheumatologists, the experts. I am also on Mobic for the pain. I have a high pain tolerance and a low tolerance for meds so it works for me. It sounds like you have a high tolerance for meds so you may need something stronger. Just talk to your rheumy, see what he or she recommends. The last two times I've been my doc has also put me on a steroid pack to try to "shock" my immune system to maybe make me feel a little better and to see if my hair would stop falling out in clumps. It worked last time so we'll see if the pack works this time. I also know what you're going through with the medical bills. I have a full time job and had a nice savings but last year I paid over $8000 out of pocket with insurance with two unexpected surgeries. This year I'm up to $2000 so far. I hope you get some answers. To me it does sound like Lupus, or at least something autoimmune. I'm so sorry you're going through this.
    Thoughts and prayers always.
    Micromedic
    I'd rather be hated for who I am, than loved for someone I'm not.

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    Thank you for your response. It makes me feel that much better. Has the precancer cells come back? How many times have you had them removed? I'm afraid I will have to go thru it again. I have a friend who has gone thru the process several times, and has no sucess. Although, it has kept her from having full blown cancer.
    I am EXTREMELY stressed out, depressed, and feel very alone. Although it's nice to have a mother who is a nurse. I am finding it difficult to find friends who truly understand. I stopped drinking about 8 months ago, first hiding it, and pretending to drink, or dumping out shots when no one was looking (a facade for the bar industry). Then when I lost my job, I stopped pretending, and when I go out, I refuse drinks and shots. But every tells me i'm such a party pooper, and I don't look sick. It's hard to explain to people and make them understand how awful i feel daily. My experiences with drinking in the last year have not been good, everytime I drink i get a terrible stomach ache, and the following 24-48 hours I get horribly sick, flu like, can't get out of bed, etc.
    I'm so lonely, and unfortunately my biggest fear in life is being alone, and i've never felt so alone in my life until these last few months.
    I appreciate the caring words, thank you.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Summertime,

    I have had very good results with Plaquenil. I've been on it for a few years now, and it gives me no problems at all. I can't imagine how bad my flares would be without it. One thing to watch out for with the drug is retinal damage. You need to see an opthamologist while taking it to monitor for eye problems. The statistics show that eyesight problems happen when taking the drug in a higher than recommended dose, and is very rare. I see the eye doc once every three months, it's quick and easy.

    To the best of my knowledge, I don't think Plaquenil will effect most tests, but it could change the results of some Lupus specific tests since it does modify or lessen disease activity. Let me look into that question a little further to make sure I'm giving you the right answer. About buying a lottery ticket, you share a sense of humor with my neurologist, because he said the same thing to me once! Hey, if you can't laugh about this stuff, the stress will eat you alive.

    Rob

    PS-Finding a good rheumo is a universal problem, as there are so few good ones. Be persistent, and don't settle for a rheumo you don't like.
    Last edited by rob; 02-26-2010 at 08:24 AM.

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    The spots have not come back and I only had them the one time. My obgyn saw me twice a year and had abnormal paps for three visits and now I have clean paps. I stopped drinking for the most part too. I have like one drink every six months or so. Most of the time my stomach hurts to bad and I get so nauseated. And yes everyone thinks I'm a party pooper too. My boyfriend even goes out without me sometimes. He's cut back on going out too because I just don't like being in smoky bars and not drinking.
    Anyway, we're always here for you...you can always write to me or blog about it. I hope you get some answers and start feeling better soon.
    micromedic
    I'd rather be hated for who I am, than loved for someone I'm not.

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