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Newly diagnosed with ocular MG

I’m 72 a just diagnosed last November. Still navigating all the information out there. My only symptom is a drooping eyelid right now. My doctor tried IV/IG first. My BP wasn’t under control so we stopped that and started me on azathioprine twice a day. We’re going to try the IV/IG again soon since I’ve got BP under control. I have a really silly question, especially since there’s many things I know I’ll be dealing with going forward that will be be much more serious, and I feel silly asking this, but I haven’t been able to find an definitive answer to this question. Every 3 months I get my roots highlighted, is that something I should no longer do? (See, silly question). So far I haven’t noticed much if any hair loss, but I certainly don’t want to make it a problem. So glad to have a place to ask questions. Thank you all.

  1. I honestly don't know about the "roots" thing. IF it does cause a problem, I am in big trouble. lol God bless you-

  2. Oh,as far as the hair dye. I had to have mohs surgery July 2023 on my scalp for squamos cell cancer. I had dyed my hair for 40 years. Grayed very early. My dermatologist told me the dye may have been the cause. He said studies had proven high percentagies

  3. This group is wonderful. I was diagnosed in November but now I realized I have had it for a couple of years at least. I have double vision, dizzy spells, loss of leg function, difficulty breathing. These usually come on after activity for 2 to 3 hours. I have fallen and laid there for half an hour to an hour and then have enough energy to do a little. But Friday I was driving home after only 1 hour working. Double vision and dizziness at work. One of the ladies found me holding on to a cabinet and made me sit down
    Feeling a little better I started home and when I finally got to my garage I had to call a neighbor to help me get out and in onto my sofa.
    I know this is long, but is this my future? I am on mestinone 3 times daily. Any advice would be helpful.

  4. Not silly at all. In fact, two clinical studies link hair dye and other cosmetics to flairs in several autoimmune diseases. I could find no clinical studies for specifically MG, but there are a handful of doctor's reports of hair dyes triggering MG crises in their patients. Given the rarity of reports, I would think the risk is pretty low. And your case is pretty mild. I would continue your life as near as possible to normal, just be aware of the risk and watch out for any bad reaction.

    1. Thanks, kind of where my mind was going. Just getting used to how MG will change my life in the future. Right now I see no symptoms other than dry eyes. I am so thankful we found it early!

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