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Thread: This is the story of my nightmare with SLE

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    Default This is the story of my nightmare with SLE

    Ok here goes. I am 49 years old. I have been sick most of my life with Lupus symptoms. I started getting mouth sores at the age of 5 years old. When I was 7 years old, I ended up with several bouts of carbuncles on my legs below the knees. It was terrible. My parents would not take me to the doctor for the carbuncles and now I have really bad scares from them. Well at the age of about 10 I started my menstrual cylcle and that is when the sun really started bothering me big time. I started getting killer headaches and joint pain. My knees and feet and hands would hurt all the time. At the age of 12 years old I developed an ugly blistery rash on the palms of my hands and bottems of my feet. I would get the blisters all over my toes and fingers. I could not get it to clear up at all. I started going to doctors and they did not do much for me. It was sad. In my early 20's the knee pains got a lot worse. I started just plain not feeling good at all. What would get me is that I would get so terribly sick and then get better. Well at the age of 35 I caught the Chickenpox and got over that. Well after that I got sicker then I had ever been in my life. This is when the malar rash appeared on my face for the first time. I started losing my hair by the handful. I started having problems breathing and the joint pain etc was even worse. I was constantly short of breath. I started going to doctor after doctor and told them right out that my sister has SLE and could they please test me for it. They would not listen to me at all. I would be told things like oh you are worrying needlessly and that Lupus is not inherrited. I nearly died before I got a doctor to even listen to me and take the time to test me for Lupus. The tests all indicated Lupus with the speckle pattern ANA of 1:360 or something like that and my sedrate was way out there. My serum compliments were all low and my white cell out was very low as well. Well within 3 days of seeing the regular doctor I was sitting in the office of a Rheumatologist. The Rheumatologist told me right out that I have one of the most classic cases of SLE that he had seen in years and that due to my history of symptoms that I most likely had it from the age of 5 years old. Now I have PA (pernicious anemia) and have to take vitamin B12 shots every month for the rest of my life. Is this common with Lupus? Just wondering. Sorry the post is so long.

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    Hi Kathy;
    First, let me welcome you to our family here where there are many people who have been through what you've gone through all of your life. Most of us, once we were finally diagnosed, realized that we had been suffering with symptoms of Lupus for many, many years and had been going to one doctor after another, only to have them scratch their heads and/or tell us that we were hypochondriacs. We, essentially, went without proper treatment for too many years and, unfortunately for some, by the time that we were diagnosed, we were seriously ill.
    I fall into that category. By the time that I was diagnosed, I had lost almost all of my hair: I had huge ulcers in my mouth, on the palms of my hands and the bottom of my feet; my face was raw and swollen from the malar rash; I felt like I had acute arthritis in every single joint in my body; my muscles ached like I had just lifted weights; and I was just always so sick (like a horrible case of the flu that never goes away and never gets better).
    It is, unfortunately, a common story for most Lupus sufferers Because it is so common, we all understand and can empathize with what you've gone through.
    Like you, I must take a B-12 shot every month (oops, I just remembered that I missed my shot last month!) as well as B-12 supplement. This helps with the pain from inflammation caused by Lupus. Also, Vitamin B12 functions as a methyl donor and works with folic acid in the synthesis of DNA and red blood cells and is vitally important in maintaining the health of the insulation sheath (myelin sheath) that surrounds nerve cells. Many Lupus sufferers have deficiencies in the myelin sheath. This deficiency often manifests itself first in the development of neurological dysfunction.
    Also, Vitamin B-12 deficiency can cause the condition of pernicious anemia which can lead to spinal cord abnormalities. Like Lupus, Pernicious anemia is a disorder in which the immune system attacks the lining of the stomach, destroying the ability to utilize vitamin B12. Symptoms of pernicious anemia include weakness, sore tongue, bleeding gums, and tingling in the extremities. Because the disease causes a decrease in stomach acid, nausea, vomiting, loss of appetite, weight loss, diarrhea, and constipation are also possible. Also, because Vitamin B 12 is essential for the nervous system function, as I mentioned above, the deficiency of it brought on by the disease can result in a host of neurological problems, including weakness, lack of coordination, blurred vision, loss of fine motor skills, loss of the sense of taste, ringing in the ears, and loss of bladder control.
    So, you are not alone in your treatment regimen either :lol: So, once again, welcome to our family. I hope that I've answered your question. Please let me know if you need anything further.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hi Saysusie,
    Yes you did answer my questions very well indeed. It sounds like you had about the same history as I do. I guess I was very upset when I was told by my doctor that I will have to have vitamin B12 shots for the rest of my life. I have a bad fear of needles and boy this nearly sent me into a panic attack big time. The doctor told me that I need to learn to give myself the shots and that that will save me money. I told him that I was to scared and nervous too and he laughed at me and told me that he has little old ladies that give themselves this shot and that if they can do it then I can too. I guess I will have to learn to do this. Say a prayer for me to get over this dreadful fear please. Thanks for giving me the answers that I needed so much.

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    I will certainly keep you in my prayers. Here's what I do to offset my fear of needles. First of all...I don't look :lol: Then, I pinch myself on the opposite arm or hand. I pinch myself pretty hard so that I don't feel the needle being inserted in the other arm. That works for me, I don't know if it will work for you, but perhaps you can give it a try :P

    Peace and Blessings
    Saysusie
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    Hi Saysusie,
    I am wondering do you give B12 shots to yourself and if so what is the best place for these shots? I was getting them in the top of my arms by the nurse at the doctors office. I am just wondering if the best place would be in the arms or the legs.

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    Hi Kathy,
    Welcome to the site. I think you'll find that most of us have such a similar story with regards to Dx, and many of us suffer for years before anything is done. As a matter of fact, there are many on this site who have STILL not been Dx'd (I have a "posoible Dx, but am being treated at least). Us folks are still welcome here which is absolutely wonderful, as theres nothing worse than being in limbo.
    Unfortunately, alot of the treatments we have to endure are really lousy (steroids, shots, etc), but usually the good outweighs the bad. I hope you find some comfort soon and keep posting - it helps!
    Take care
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    Hi Lauri,
    Thank you for your post. What is sad is that often times General Practitioners do not understand or know that much about Lupus. The doctors do not want to listen when you tell them that there is a history of Lupus in the immediate family, because they do not believe that it is inherrited. I will tell you about some of the experiences I had before I finally got diagnosed. One doctor told me to go out and get drunk as I was needlessly stressing myself out and that I was perfectly healthy. I had another doctor tell me to go to the beach and get a beautiful tan, ummm I am seriously sun sensitive. I went through things like this for over 15 years until one day when I could hardly breath and my heart was not beating right and I had the malar rash bad and bald spots all over my head and a lot of other things going on, I picked out a doctor right out of med school in my city and I went to him with a list of all of my symptoms and family history. I told him in no uncertain terms that he was to order every test he could think of to test for Lupus. I told him that I was paying him for his services and that if he could not do that I would leave and he would not get paid period. He laughed and said wow you are very outspoken and have apparently had problems getting doctors to listen to you. He said that he was listening and that he indeed did think that I had lupus and ordered all the tests for it. He asked me if he could also order a thyroid panel and I said that that would be ok. Within a week I was diagnosed with Lupus and sent off to the Rheumatologist who totally agreed and started me on a lot of medications to get me out of the flare. It was affecting my heart and lungs, ie, heart muscle causing heart arythmia. Thank you letting me post here. I feel a lot better.

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    OMG, Kathy -
    Some of these docs have NO BUSINESS seeing patients!! I have to say that here in Boston, each specialist I did see suspected lupus almost from the beginning. But, after doing bloodwork (always a neg ANA, but other blood work not normal) they would say it wasnt lupus. A few even said it was DEFINATELY not lupus, due to the ANA. I didnt go to med school, and I have found all kinds of info about "seronegative lupus", so how could all of these doctors not have? A couple of years ago, I was in the hospital for acute hepatitis (they attributed it to too much Tyenol). Anyway, in walks a nephologist, who they called in after protein and blood were found in my kidney workup. He says, "So, you have lupus." I said, "actually, no. Well, some have said yes, some have said no". He went on to say that the bloodwork/urine etc showed lupus. I left the hosp after a week, but a week later I was back at the ER with SEVERE pain in my lower back/kidney. It was unbelievable. I was supposed to see him for an appt when I got out of the hosp anyway, so my husband told the ER doc that he wanted the kidney doc called. Well, firtst the ER doc said he thought I was drug seeking, because I had been there the week before (even though I was there on the verge of liver failure). Second, he refused to call the kidney doc because he thought I was faking. He wouldnt give me pain meds but gave me something to sleep. I was literally (according to my husband) crying out in pain every time I moved - while I was out cold. He did an ultrasound, and there was swelling but no infection. They dcided to admit me at like 3AM, and called the kidney doc. He came in late the next afternoon and told me I needed a psychiatrist! I said,"You are the one who told me jsut last week there was something wrong with my kidneys, and that you wanted me to see you when I was discharged." He said, "Well, you dont have lupus, but I think all of this is making you very depressed. I know a great doctor who deals with people who are sick alot" I almost died. Not to mention, he said this in front of my aunt and uncle who were visiting, without my permission. I was mortified!!! So, I have had docs suspect lupus, and then change their mind. I have to say, after a few years of that frstrating, discouraging humiliating treatment, I resolved myself to the fact that I was going to be sick, no one was going to help me - and to just deal with it. I stopped seeing all my doctors (even my neuro - who actually was on my side but did nothing but perscribe me pain meds), stopped all my meds except for my anti-depressnts and gave up. It was just last year that I decided to go for it again, with the help of a great group of women friends (another support group I belong to), who convinced me that NO ONE should be this sick. There has got to be SOMEONE who can figure it out. I started by going to a new PCP - told her everything, she was great. At the time I was not in a flare, but I had made the contact. When I got sick again, after a couple of appts - her seeing me with constant swelling, elevated sed rates and CRPs, constant pleurisy, etc., she said a few months ago, "This is just like lupus." AHA!!! I said "Nope, I have a neg ANA" She said,"there are patients with lupus (10% or so) that DO NOT have a pos ANA. She put me on steroids and off I went - almost dxd after 10 years. When the steroid taper ended, I got sick again, she saw me, put me on constant steroids and Plaquenil - and thats where I am now. And a referral to rheumy. I told her my fear though, that I was afraid to see a rheumy, because I didnt want him to say there was nothing wrong with me, and stop my meds. She assured me that there is NO QUESTION at this point whether I have an autoimmune disease or not, and there will be no UNdiagnosing in the future. I sobbed with relief. That was a week ago, actually, and the Prednisone started helping right away - Thankyou God. I dont know which feels better, being better physically or being believed by a professional!! Anyway, soryy so long - oh, gosh, I have so many stories....But, I cannot believe HOW MANY people have to go through this horrible humiliating process for nothing?? Do any of you "longtimers" know of any type of program or research that is being done to change this? And, I hate to say it, but this does seem to happen to women much more than men (dont yell, guys - I know it happens to you too!!) It just seems that many docs try to chalk these symptoms up to being "emotional" and/or "hormones". Does anyone else agree? I mean these stories are heard on all kinds of websites, diagnois TV shows, everywhere. I wish we could start somekind of campaign for people with undx's symptoms. Take care all - aorry for the long post!

    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    Kathy;
    Sorry I am late in answering your questions. No, I do not give the shots to myself (way too much of a chicken for that). I go to my doctor each month to let them do it. I am still getting them on my shoulder, opposite sides each month!

    I am so happy to hear that you stood up for yourself and demanded action from a doctor. I always say that we must be our own health advocates and that we must do exactly as you did; demand action or refuse to pay! So, I am sending you a "Shout Out" and an "Atta Girl" for making your doctor do what he was supposed to do. Don't ever back down from that!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hi Saysusie,
    I will be giving myself the shots, because I can not afford the copay every month to get them at the doctors office. At first I did not realize that I was being charged a co-pay until the 10th of this month. Also the doctors office is 25 miles away from where I live. I too have a very bad fear of needles, but I have had to overcome a lot of things in my life and well I will get over this too. I talked with the doctor about my fear of needles and he told me that he has little old ladies that give themselves the shots and that I can too. I will do okay with it.

    I learned to speak up to the doctors out of pure desperation. I thought that I was going to die. I am serious. As it turned out the Lupus was attacking my heart muscle big time and it put me into a heart arythmia that could have caused me to die intantly. It was not good. Sometimes you have to speak right up. I learned to speak up big time when a doctor told me to go out and get drunk, because there was nothing wrong with me and that I was worrying and stressing needlessly. I had always been very shy and quiet and never said very much until that happened to me. I decided that no doctor would ever treat me like that again. I had to learn to speak right up and not get walked all over. It breaks my heart to hear what some of the folks are going through with the doctors. They too need to speak right up and remind the doctor of who is paying for their services, etc. I wish that there was a way to get the medical community to listen better to people and not be so quick to dismiss them. I am doing pretty good with this illness, but as you know there is no cure and every now and then the Lupus rears it's ugly head to let me know that it is still here. Well good bless and hope all is ok with you.

    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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