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Thread: Severe Headaches

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    Default Severe Headaches

    I was diagnosed with Lupus 17years ago. In the last few years I have developed severe headaches, confusion, speech issues, and some numbness and tingling.

    I am seeing a neurologist and so far he can not figure it out. My mother says that she wil be talking to me and I will "zone out" and it will take her awhile to get my attention. I dont know what to do anymore. I have had CT Scans, EEGs, MRIs, LPs. It is just so frustrating.

    I also have gained weight in the last several years. Everytime I go on prednisone my weight increases a little more.

    I have felt for a while that my Rheumotologist was being dismissive. My last visit he told me I was way overweight and I didnt feel well because I was overweight. I told him I was losing. I had lost 15 pounds since december. He told me it was probably muscle weight. He also said I was making a "career" out of going to the Dr. I felt so hopeless. Any suggestions?

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    Quote Originally Posted by laura.shella View Post
    I was diagnosed with Lupus 17years ago. In the last few years I have developed severe headaches, confusion, speech issues, and some numbness and tingling.

    I am seeing a neurologist and so far he can not figure it out. My mother says that she wil be talking to me and I will "zone out" and it will take her awhile to get my attention. I dont know what to do anymore. I have had CT Scans, EEGs, MRIs, LPs. It is just so frustrating.

    I also have gained weight in the last several years. Everytime I go on prednisone my weight increases a little more.

    I have felt for a while that my Rheumotologist was being dismissive. My last visit he told me I was way overweight and I didnt feel well because I was overweight. I told him I was losing. I had lost 15 pounds since december. He told me it was probably muscle weight. He also said I was making a "career" out of going to the Dr. I felt so hopeless. Any suggestions?
    Hi Laura,

    I do have a suggestion, " fire this IDIOT doctor."

    Are you on plaquenil? I have alot of your symptoms, it may be the lupus.
    I think most of us had to deal with incompetent doctors, at least once. You need to find a new rheumy, asap. Because you can't expect getting help from this insensitive jerk.
    I think, that your MRI's ect. where ok, is a good sign.
    Don't loose hope, loose your rheumy.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    laura.shella (04-17-2010)

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Default

    Hi Laura,

    Welcome to WHL. I also have a suggestion. Tell your Rheumo he should try making a career out of treating patients, then fire him. And the whole weight thing, in my opinion, is just a cop out that lazy/incompetent Rheumos use when they don't have a clue about their patients problems.

    Your symptoms could be from any number of things. SLE can cause neurological complications that can lead to numbness and tingling, as well as cognitive dysfunction. Here is a link to an article explaining the various neurological manifestations Lupus can cause-

    www.hss.edu/conditions_14294.asp

    I have both SLE and MS, and I have, or have had in the past, many of the symptoms you are experiencing. Some are from SLE, some from MS. Having both diseases is quite rare, so I doubt anything like MS is your problem. If your symptoms are indeed neurological in nature, there are drugs that can treat these problems. I take Neurontin, and it works well at keeping neurological pain and sensations in check. Maybe you could ask your neuro if there is a drug like this he could prescribe.

    I wish I had a better answer. Let's see what some of the others here think. I hope we can help you find the answers you need.

    Rob
    Last edited by rob; 04-17-2010 at 05:39 PM.

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    laura.shella (04-18-2010)

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    Hi! Just an update. I went to see my Neurologist and and he told me that he belives that the headaches and "zoning out" spells are due to seizures. They are going to repeat the EEG, but he said this could be hard to prove. He gave me Relpax for the headache pain. The side effects seemed really severe, I havent taken it yet. Does anyone know anything about this drug? Any advise?

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