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Suz
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I was diagnosed in 2004 with systemic lupus and malar lupus (boy do I get that butterfly rash) and I had to undergo repeat blood work for 4 months before the doctor finally told me, then he sent me on to a rheumatologist and that insurance carrier only allowed a few visits with the rheumatologist, who wanted my treatment to stay with the way it was going. Fast forward to Friday and I had changed to another HMO primary care doctor and he tells me he isn't sure I even have lupus. What??? He said I am positive for 3 out of 4 of the blood tests but not the blood test that is for "inflammation" like happens with the kidneys and such. His partner had been treating me for the past 2 years and saw me with the malar lupus on my face and even with doing his own blood work never questioned that I had lupus. I get the malar rash followed by my joints that really hurt and fatigue that is so bad with some low grade fever, which I understand is the "flare". I've been on lupus medication since 2004, so I am now so confused. How do I respond to a doctor that says I might not have lupus when I have the symptoms I do? This is really wierd and I could use your feedback. p.s. I did go to www.lupusfoundation.org and all information on it is where you are sent to other people's site so I think the above is potentially a typo. Post edited by: Suz, at: 03/16/2008 17:01 A good rule of life is do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup |
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Suz
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Well, 20 people have looked at this post, doesn't anyone care enough to respond or even offer any suggestions?? Is Lupus this big boogyman that no one knows how to discuss it? Post edited by: Suz, at: 03/20/2008 14:00 A good rule of life is do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup |
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fibroforever
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Hi Suz- Welcome to the site. I'm sorry you're feeling that no one is talking about Lupus. For some reason, this site just isn't quite as active as others. I often wonder if people are just too ill to even type. I'm unsure. Now onto you. What are your symptoms for Systemic Lupus? Other than the blood work? You obviously have the Discoid Lupus with that butterfly rash you're talking about. Not sure what to tell you about the rheumy's. I've been to several. My tests are strange too. It's taken me some time to find a general phsycian, rheumy, and psychologist that I actually have that connectionwith. So now, I just "try" and go with the flow. I do what they say and just agree to disagree with what they think is going on with my blood tests. You can read my bio and find out a little more about me. And feel free to PM me anytime with other questions. I tend to look at those before looking at this site. Mostly because I'm a group leader for the Fibro and Chronic Pain groups. They take up a lot of my time. You take care! And I hope to hear from you soon! I'm here for ya! Really!  Amy "When you feel like giving up, remember why you held on for so long in the first place." ~Unknown |
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redhairali
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Hi Suz, LFA is at lupus.org.There just isn't one test that will give a firm diagnoses of lupus. It seems like all of us lupies seem to test all over the place when it comes to blood work. So any doctors just don't know much abut lupus. It can be a very real frustration. You do need to find the right blend of doctors to treat you. Ali |
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Suz
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Amy and Ali--THANK YOU BOTH SO MUCH for your replies. Ali, I think you hit it in that we test all over the place in blood work and we can't tell the doctor of certain symptoms if we're not aware of them as being related to lupus. I've come to the conclusion that to intelligently discuss whether I have lupus with my doctor, that I'm going to have to learn as much as possible about ALL THE POSSIBLE SYMPTOMS. How can any doctor tell you they aren't sure you have lupus when they don't review a long list of potential lupus symptoms with you. I have been trying to read up so much about Lupus and in addition to the other symptoms I have photophobia, migraines, and some hair loss. A good rule of life is do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup |
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greeneyedlady
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I Suz, my name is Elissa. I totally understand your plight. I am 54 years old and have been going from one doctor to another for years! Finally last year I went to an allergist and he took a tongue depresser to my arm, printed my initial and five minutes later my arm hived up. He order blood tests and discovered my ana was very high. He sent me to a rheumatologist. This doctor had the bedside manor of a wet rag. He didn't like me asking questions. Needless to say I dumped him and found a really good rhemuatologist. He ordered extensive blood tests and discovered I not only had lupus, but sjogrens and raynauds. I received a bill from the lab and the cost was over $4,000.00. I am very lucky to have very good medical insurance. That is how he was able to diagnose all of the above. One piece of advise I could offer you is to GET COPIES OF ALL OF YOUR TESTS!!!! You just don't get lupus in your fifties. I have been told that my symptoms started when I was a child. He asked me if I was eye sensitive to the sun. I have been wearing sun glass since I was eight years old. He asked if I had many cavities when I was a child. My answer was heck yes. He asked me if I ever had miscarriages, my answer was yes. He spent at least one hour with me asking questions. I have been on several medications and the list keeps on going. Predinisone is a very good med but has many side effects. He will not increase my dose because it can adversely effect your bones. I also suffer from kidney stones. Last week I thought I was having an attack of kidney stones. Went to my urologist, had x-rays and CAT scan and the stones were not floating, they are still attached to the kidney so the pain I was having, and I mean excruiating pain, was not caused by the stones. I was advised to see my primary care doctor. I thought now why would I go to see him when I have been seeing him for years and he didn't have a clue about lupus so I went to my rheumatologist. After a five minute exam he advised me to go for x-rays of my hips and ordered a MRI. The x-rays was the easy part. I did not need my insurance companies approval for that but the MRI is another story. He sent me home with pain killers and had to wait 24 to 48 hours to get an OK from the insurance company. This happened on a Thursday. Today I finally got the approval from the ins. co. I have an appointment for the MRI tomorrow, but, I looked up the codes he put on the prescription for the MRI and know what he is looking for. I have found that doctors tell you only what THEY want to tell you. That is why I get copies of all tests, CT scans, blood tests and MRI's. You have a legal right to have these for your records. The CAT scan I had last week said my uterus was slightly slanted. Funny but my uterus was removed in May 2000 so now I have to question a: was it really MY cat scan he was reading b: what school did he graduate from? and c: do I want that facility to perform any more tests on me? If I did not request the results I would have never known of this error. You have to become your own advocate and listen to your body. Two months ago I had a hard time breathing, it really hurt when I took a breath, I was in tears. Went to my rheumatologist and he started an IV, put some meds in it and ten minutes later I could breathe without any pain. He said it was from the Lupus. He never told me in the past that this could happen. They don't tell you until you experience symptoms. So my advise to you is if you are not feeling well see your rheumatologist first. Autoimmune diseases can reak havoc on the body. You will have good days and bad days. If I can help you just contact me. Even if you just need to vent. Family and friends really don't know how you feel or can understand the pain and how scared you can feel. Hope I have helped. Wishing you well..., Elissa |
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Suz
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Hi Elissa and thank you so much for responding to my post. My new doctor finally decided after everything that he is ruling I have lupus and keeping me on lupus medication. I had a very traumatic accident in my early 50s, a fall that broke and crushed part of a vital supporting bone in my back plus messed up part of a prior surgery in my back and this caused hospitalization for a while. My walking disintegrated from a walker to an electric scooter as the back worsened. Within less than a year of the fall, a doctor saw me with malar lupus (the butterfly rash on the face) and ran monthly blood work and after many months finally declared me as having systemic lupus and malar lupus. My eyes are also sun sensitive and in fact, while inside I have had to lower the intensity of all light bulbs to their lowest level, and instead of two light bulbs at the sink, I took one out, because all that light bothers my eyes, but no one has ever asked me about this. In fact, I have two kitchen light fixtures that have 3 bulbs each and I have taken out all bulbs except one because it is too much light for my eyes. I think because lupus symptoms vary so much from person to person, and because lupus intensity varies from person to person and can be extremely active and have doctors taking biopsies of the kidneys or not as active and be like mine where I get the facial malar rash and then a relatively short flare of joint pain and extreme fatigue where I go to bed--it confuses doctors that don't deal with lupus much. The amazing thing is that with the HMO I am on that they will not be able to send me to a rheumatologist unless I go into the extremely active lupus where it has impacted the kidneys and other organs. Seems dumb to wait that long and you would think preventative medicine would be to send me now for a good work up, but that's not what they will allow. Years ago I had a doctor's office calling to have me return because my pap smear readings were odd. I explained that they needed to re-read the medical history they had taken from me. I then explained again that I had a hysterectomy and my cervix was removed, so what had they done a pap smear on. And no, I wasn't coming back in. Then it all made sense to her as to why the pap smear readings were odd. DUH!!! A good rule of life is do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup |
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mumeva
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Hi Suz, I too am very sensitive to the sun and pretty much all types of lights. I keep my house pretty dark and especially during the summer months I keep all the shades closed - it looks like a dungeon. I'm extremely lucky because I have an outstanding rheumatologist in San Rafael, CA. She is a teaching doctor at the University of San Francisco and is up to date on all the medications and tests. I am ana-negative lupus but have all the criteria for Lupus. I have central and peripheral nervous system lupus. I also have fibromyalgia. The most recent thing that started happening to me is the brain bleeds. I have now had two in the last five months. I am having trouble hearing out of my right ear because the hemorraghes have been along the frontal earhorn. I get the thunderclap headaches and intense pain along with vomitting and ahost of other problems. I believe that stress plays an important role. Its hard not to be stressed and at times I think I'm not but must be. I have really good insurance but of course pay through the nose for it. Its better than paying the cost of a hospital visit. Wishing you well. Eva |
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Suz
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Hi Eva and thanks so much for responding and I appreciate it. I am someone who comes up ANA positive, and I also get severe migraines and they have me seeing a neurologist for occipital neural blocks (its like a head epidural) to try to help that. I also have bad tinnitis since my fall that hurt my back. Unfortunately, since my original fall that injured my back and the hospital stay for that (and the lousey medical insurance my employer had for that) I was hit with very high medical bills. Add to that the waiting time for Social Security Disability approval, and that I used every monetary resource I had, it means that I now live in poverty--HUD helps me out a little with my monthly housing fee. So I can only afford to go with the Medicare HMO care. I'm allergic to Prednisone so they use generic Plaquenil. I just hope that if I keel over dead one day that this HMO will recognize that.  Post edited by: Suz, at: 04/02/2008 15:04 A good rule of life is do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup |
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mumeva
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Hey Suz, I filed for Social Security two years ago in April. They turned me down after mounds of paperwork and seeing their doctors last August. I was admitted to ICU at the end of August due to the brain bleeds and finally have a lawyer (brother-in-law) who is handeling my case. Now we have to go before a hearing judge. When I win this case (thinking positive) they will owe me quite a bit of money. Its rediculous I see a specialist every month for the past 15 years and now seeing a neurosurgeon and have blood work done every month what more do they want? Am sick of this. They turned me down because they said I was young and could work even though I have vertigo-brain bleeds-sensitive to lights and sun and nerve damage boy that sounds like I'm in tip-top-shape. Oh well what do you do? I guess thats where my sense of humor kicks in. Eva |
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