Fighting rare disease

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lilucille
lilucille Posts: 4 Member
in Introduce Yourself
A year ago I was diagnosed with a rare disease called pseudotumor cerebri. Due to the disease I developed something in my eyes called papilledema. I went to multiple doctors and took multiple drugs all of which the outcome was very bleak. The doctors were telling me I could go blind someday. There's not much research on this disease and not much known other than it happens to overweight people. I set out to cure myself I bought an elliptical and downloaded MyFitnessPal. I've lost 31 pounds now. The papilledema is gone in my eyes. The doctors are stunned with how quickly my eyes have healed themselves. And I feel so much better. For so long I suffered and had so much fear of the unknown for there were no answers with this disease but I'm on my way to remission. I've been given a second chance to show myself that I can do this and hopefully help others and motivate them to show them especially when you have so much to lose that you can gain so much by helping yourself. 67 more pounds to go! Keep fighting everyone!!!

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  • RunsWithBees
    RunsWithBees Posts: 1,508 Member
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    What a great success story! Thanks for sharing. It is amazing what eating right and exercising can accomplish and how it can improve health so quickly. I healed my liver when it was crying out for help and since losing the excess weight and remaining active it’s been healthy and I feel great! Keep going, you will accomplish your goals! :)
  • Junebug2022
    Junebug2022 Posts: 78 Member
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    What is this disease? I have a clear blond spot in my left eye that is getting larger very slowy. I just noticed this year and im going to see a eye doctor soon.... is it like that?
  • MarvinsFitLife
    MarvinsFitLife Posts: 874 Member
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    Thank God it’s gone! You’re an inspiration keep it up @lilucille
  • robertw486
    robertw486 Posts: 2,390 Member
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    lilucille wrote: »
    A year ago I was diagnosed with a rare disease called pseudotumor cerebri. Due to the disease I developed something in my eyes called papilledema. I went to multiple doctors and took multiple drugs all of which the outcome was very bleak. The doctors were telling me I could go blind someday. There's not much research on this disease and not much known other than it happens to overweight people. I set out to cure myself I bought an elliptical and downloaded MyFitnessPal. I've lost 31 pounds now. The papilledema is gone in my eyes. The doctors are stunned with how quickly my eyes have healed themselves. And I feel so much better. For so long I suffered and had so much fear of the unknown for there were no answers with this disease but I'm on my way to remission. I've been given a second chance to show myself that I can do this and hopefully help others and motivate them to show them especially when you have so much to lose that you can gain so much by helping yourself. 67 more pounds to go! Keep fighting everyone!!!

    Completely awesome.

    That must have been really scary knowing there was a chance of a long term vision problem. And it's just amazing that things changed so quickly with the weight loss as well.

    That other 67 pounds doesn't stand a chance. You've got motivation beyond what most of us had, and have already seen the results of the work.
  • acquillak2015
    acquillak2015 Posts: 3 Member
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    Wonderful!!!💕💕💕
  • lilucille
    lilucille Posts: 4 Member
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    Junebug2022 wrote: »
    What is this disease? I have a clear blond spot in my left eye that is getting larger very slowy. I just noticed this year and im going to see a eye doctor soon.... is it like that?

    For me I started with very noticeable wooshing sounds in my ears for months. Then profound headaches that would not let up. I did not notice the blindness taking hold. They eye doctors and neurologist told me your body adjust to the blindness as it progresses and you really don't notice until it's too late. When I started noticing is when people could sneak up behind me and I could not see beside me anymore. My peripheral vision was lost. For me also I had a lot of eye pain. It was hard to move my eyes. To close them, open them, look side to side, all that. Im so glad your going to an eye doctor. I do hope you find what's going on. Best of luck.
  • lilucille
    lilucille Posts: 4 Member
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    monkeefan1974 wrote: »
    What a great success story! Thanks for sharing. It is amazing what eating right and exercising can accomplish and how it can improve health so quickly. I healed my liver when it was crying out for help and since losing the excess weight and remaining active it’s been healthy and I feel great! Keep going, you will accomplish your goals! :)

    So happy for you too!! That is a true miracle. Thank you for sharing this as well!! Thank you for the extra motivation too!
  • JeromeBarry1
    JeromeBarry1 Posts: 10,182 Member
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    First, Congratulations!
    Second, At my most obese, I was storing the newest excess of fat in a new lump on the side of my neck. It was not symmetrically distributed. I speculate that people have varying places to store excess fat, and now I shall henceforth add "eyeballs" to the list of places.
  • bpaine0715
    bpaine0715 Posts: 14 Member
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    It's crazy nice to see someone who's over coming it. My doc said something bout it a year and a half ago but no one ever went farther than MRI. This year the vision started to go in and out and I was able to go see a specialist and so soon I'll have MRI go from there. After my research I saw most prevelant in overweight people and ladies of child bearing age and I check both those boxes. So I'm working on losing weight (do have some medication working against me) but its nice to see someone thriving! KEEP IT UP AWESOMNESS!!!
  • lilucille
    lilucille Posts: 4 Member
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    I hope you get your answers soon!
  • T__Queen
    T__Queen Posts: 14 Member
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    Hello! What are the odds?! I'm also in the process of being diagnosed for this. My docs call it IIH. Right now I'm just classified as having "chronic complex migraines". It makes losing weight so much harder when you're in pain everyday so CONGRATS on the mega weight loss!

    Feel free to add me! I'll definitely understand your daily struggles <3

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