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    Old 05-02-2005, 10:01 PM   #1
    FranklyMrShankl's Avatar
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    Need Answers PLS READ

    Hello everyone, I am new here and would like to hear others opinions. I will proceed to give as much helpuful information as possible as I have been having unexplainable symtpoms as of late. Five years ago, when I was 15 I had a seizure. I was put on Depakote 1000 mg per day, yet have been fortunate to not any have anymore full blown seizures since. I have had occassional twitches and the medicine has been weened to a light dosage since that time. As of a two months ago I started to have constant headaches in many different forms. Recently I have noticed my hands constantly turning bright red/ light purple when I go surfing or am in cold weather. I cannot seem to find an answer for this. This is not something I am tripping out on as my friends have noticed my hands as well. I went to see my nueroligist and did not rush into an MRI, but finally after the persistent headaches continued, we decided to have one done. I did not really mention the question regarding my hands - which I regret. Thankfully, the MRI came out with no abnormalties. My questions are, is it possible for lupus to affect one region of the body, such as my blood (syptoms regarding color hands and fingers) or my nervous system (causing headaches or possibly seizures), or does it generally affect the whole body as in the form of rashes and skin etc? Also, could my medicine (Depakote) have caused a blood disorder such as lupus( I have taken it for 4 -5 years, my nuroligist said it could not cause headaches)? Can a blood exam be done to test for lupus, how is it diagnosed? I came across the Lupus disorder on the internet on researching headaches, and decided to post here. At times I simply feel helpless and depressed due to my constant headaches and the wondering if I have this disorder. The more these problems linger, the more it seems to trouble me. Would an MRI have detected a such disorder? I would also like to say that the board is very informative, and I would appreciate anyones advice, knowledge, comments, or questions.

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    Old 05-02-2005, 11:47 PM   #2
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    Re: Need Answers PLS READ

    Hi there Frankly

    Welcome to the board! First off, thank you for sharing your symptoms with us. I know how frustrating it is to have these wacky symptoms that no one knows what to do with! Your symptoms are very similar to Lupus, so I want to direct you to the main Lupus board here and look at the top of the board. You will see "Criteria to diagnose Lupus" and "Criteria to diagnose Antiphospholipid Syndrome". Have a peek at the criteria for both of those, and write down how many symptoms you have not only now, but in the past too. Under the Criteria to diagnose Lupus you will see the "Alternative Criteria" below. Have a peek at those too! When you write them down, make sure you let us know how many you have. Its a good memory exercise, I never knew how many symptoms related to Lupus I did have in the past until I sat down and thought about it!! Here is some information about Lupus for you, I hope that it doesnt overwhelm you too much!

    Lupus is an autoimmune disease where the body basically is allergic to itself (simply put) and attacks itself. The immune system is in overdrive and mistakes healthy cells for unhealthy ones. When we get a cold or a flu our immune system kicks into gear and helps to get rid it. In a person with Lupus, the body will think that it has to kick into high gear and get rid of infections that aren't actually there. The immune system can go into overdrive and have a real hay day in our bodies! They call this period of "hyperactive" immune response a "flare". You will see a lot of people use that word, and now you know what it means. I said earlier how the immune system will go into overdrive and attack healthy cells in patients with Lupus, and this can happen in the organs and tissues. A common place for inflammation to occur is in the kidneys. Lots of Rheumatologists (or "Rheumy's" as we like to call them) will diagnose patients that don't have the blood work markers positive by doing a kidney biopsy. I can get into a lot of the details, but I will keep things as short as I can so I don't make your eyes go crossed with information!!

    I want to point out next that every patient with Lupus is different. Some have very mild form of Lupus and have mild symptoms, while others have more aggressive forms and have severe symptoms and organ involvement. Every single patient you talk to with Lupus will tell you a different story about themselves! You asked if Lupus can cause problems in different locations in the body. You bet it can. Lots of patients have disorders of the central nervous system that cause Neurological symptoms. Anywhere that can get inflamed will get inflamed in some patients with Lupus. There is a connection to all of the different symptoms going on within your body. There are also many patients that not only have Lupus, but have some of the associated autoimmune diseases that can go with Lupus. One is a blood clotting disorder that can affect 70% of patients with Lupus called Antiphospholipid Syndrome or "Hughes Syndrome" as I mentioned earlier. One very common symptom of Antiphospholipid Syndrome is memory loss, migraines/headaches, and a history of seizures. You had said that you haven't had a seizure since your first bout of them? That is common with the form of seizures that go with Antiphospholipid Syndrome. You know how you said that your hands get very white and red and feel like they are going to break off when they are cold? That is another very common symptom of Lupus. I live in Canada so you can imagine how much fun my hands are in the winter!! Another thing I want you to know about Lupus is that it is NOT contagious. Lots of people think that it can be caught like a cold or flu, or through sexual contact. It can't! BUT Lupus can be genetic! Try and think of anyone in your family that has a history of Lupus ( or symptoms that were undiagnosed that could be Lupus) or other autoimmune diseases including Rheumatoid Arthritis. Can you think of others in your family that may have or have an autoimmune disease? I am the only one in my immediate family with Lupus, but my grandma had Rheumatoid Arthritis. Lots of people don't have a family history of Lupus too, so its kind of hit and miss.

    Its very doubtful that your medication is causing your problems. You asked about how to get tested for Lupus...well Lupus can be a tricky one to diagnose, but a good clinician (and blood work master) can figure it out quickly. There are blood work markers for Lupus and that would by why you had so much blood taken! The basic ones include the ANA, Anti-DNA, Anti-RO, Anti-LA, Anti-SM etc. The list is endless... trust me on that one~! This is where things get tricky. There are 10% of patients with Lupus out there that do NOT have the blood work antibodies positive, and never have in the past! These patients are considered to have "Sero-Negative Lupus". Sometimes the blood work only comes back positive when someone is in the hospital very sick, and sometimes the blood work never comes back positive at all! So thats why I say it takes a good clinician to catch Lupus, its a real sneaky one

    I hope that this helps you understand Lupus better. If you sit down and really think back to when all of the "funny symptoms" started then it will help you in the diagnosis process. I always recommend to patients to request a copy of their patient charts. If you can see whats on paper in your file then you can put together this "puzzle" of symptoms. You have a right to your blood work and other testing and if they refuse them then you can fight back. The records that these doctors have are OUR charts. Go through the chart when you get it and write down all the tests that came back out of range (ones with an "H" or a "L" or anything abnormal) and then we can figure all of this out for you!

    It can be very hard to get a firm diagnosis of Lupus, I had to travel across the world to see a doctor and get diagnosed after 12 years of symptoms with no answers! I think you need to see a Rheumatologist that specializes in treating Lupus patients. I forgot a couple of your questions! The MRI scan should show inflammation and everything going on, but it doesn't always! There are some forms of inflammation that are undetected by MRI because they are so microscopic. Even though they can be very small, they still can cause all kinds of problems. Please continue to ask as many questions as you want! Its great to meet you and hope to hear from you soon!!

    ~Luv, Angelic

    Old 05-03-2005, 01:01 PM   #3
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    Re: Need Answers PLS READ

    Dear Frankly,

    Hello & greetings to you. I'm just wondering: does your mention of surfing suggest that you live in a very sunny climate & get lots of sun exposure? UV exposure is certainly a flare trigger for many people with various forms of lupus (e.g., systemic lupus = SLE; plus other "subsets" such as discoid lupus & subacute cutaneous lupus).

    I didn't sprout persistent rashes until my late 30's. Even then it took me at least 6 years to divine that they were probably sun-related. In the early days, it would take as much as 3 months after "big sun" for an early rash form to erupt, so I surely didn't make any correlation.

    For many years, though, I did notice a weird lacelike skin mottling almost immediately after being in the sun, with a shivery & shaking feeling and often big headaches as well. Only after I was Dx'ed did I realize this one thing was probably "livedo reticularis".

    I also had migraines starting at least 15 years prior Dx. In short, I evolved (?!) very slowly, I suspect.

    I hope you post further, when the mood strikes. Meanwhile, best wishes to you. from Vee

    Old 05-27-2005, 12:01 AM   #4
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    Re: Need Answers PLS READ

    Have you considered Raynauds Phenomonen? If my fingers and toes get too cold they get discolored.

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