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Thread: How long should I wait before treatment?

  1. #1
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    Default How long should I wait before treatment?

    Hi,
    I had 6th cranial nerve palsy (double vision) about 3 weeks ago that has cleared up for the most part. It came with frequent headaches, rashes, ringing ears, lots of nausea and exhaustion. I went to a nuerologist and he found some small lesions on my brain MRI along with a positive ANA of 1:320. I've had Lupus symptoms in the past (raynauds, fatigue, concentration probs, low platellets, etc) so I'm assuming that is what I have but haven't gotten in to be diagnosed yet.

    I am being referred to a Stanford rheumatologist but the process seems very slow and I'm wondering how safe it is to wait for treatment. I'm still having some nausea, headaches, fatigue, and slight palsy on my right eye but nothing close to what it was a couple of weeks ago. I started taking low dose aspirin because I read something that scared me about strokes but other than that I have no medication.

    I guess since there seems to be a lot of brain stuff I'm just worried about permanent damage that may or may not be going on. Does any one have any ideas about what I should do...wait for an expert at Stanford or somehow find a rheumatologist that can get me in sooner? I would ask my general practicioner but he doesn't seem to have much experience with Lupus.

    Any thoughts are appreciated! Thanks, Maria

  2. #2
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    When is your appointment at stanford? You're lucky that you live in an area with such high quality care available. In my oppinion you shoulnd't take aspirin unless a dr tells you too. With Lupus the factor that can cause clotting isn't in everyone and even if you have it they may not have you treated with a blood thinner since these can be very dangerous and hard on kidney and liver. It might also through off tests that they want to do when you get into Stanford.

    I think it is really important to find out exactly what it is, keep an open mind, it may be something other than Lupus and they need to know in order to get the best treatment. You don't want these guys just throwing drugs at it. Especially if your symptoms have subsided.

    hang in there.
    much love to all my lupie friends -

  3. #3
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    Thanks!!!!

    What you said about the Aspirin makes a lot of sense. I also appreciate the perspective you've given me about waiting for treatment. If this is Lupus then I've probably been living with it for years without treatment so another couple of months probably won't make much of a difference. And you're right, I am lucky to have the option of Stanford close by so I'll just wait patiently to see if they accept me (I don't have an appt yet, doc just sent over referral).

    But EEEK! having something go haywire in my brain is a lot for this nervous, type-A person to handle!! So can I ask you one more neurotic question? The neurologist and my family doc have said it's ok for me to keep exercising but I'm nervous because I was getting lots of headaches when I did and the nerve palsy happened after a short jog. I'm not physically able to do anything very strenuous anymore and even lifting half the weight I used to gives me headaches. This scares me but losing my strength and favorite stress reducing activity scares me almost as much. Could you give me your opinion?
    Thanks, Maria

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    I'm not a doctor - but for me the sun flares me out badly, I get very confused, disorented, loss of balance, since you live in a pretty sunny climate if I were you I would stick to indoor workouts until you know more - see if you feel more comfortable on the treadmill - plus any hint of a problem and you can stop your work out.
    much love to all my lupie friends -

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    Yeah, I'm starting to notice a big difference in the sunlight too. Thanks for the help!!!

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