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  1. #1
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    Multiple Sclorosis

    I suffer from multiple sclerosis and this helps me with my pain and to distract me with my deteriorating condition. I don't know anyone else with it and I haven't taken myself to support groups yet but I began early symptoms a few years ago and am in a more advanced stage.

    My hair just started falling out in clumps. My veins on fire. Sometimes I can't walk. Does anyone at all here have MS and can share experiences. I don't want to be a downer about health problems and all of that but if you wanna message me and keep it private I could really use some support from a mer. Private or right here is fine. Thanks
    Shannon

  2. #2
    Senior Member Undisclosed Pod
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    Ugh I am so sorry to hear that. I have something similar and was misdiagnosed with MS a few years ago- but then they figured out it was similar but less brain lesions. It was a terrifying experience. I am thankful to not have it and have seen many people suffer. I hope you have a good team of people taking care of you. I can appreciate the frustration of your body not doing what you tell it to, that fiery burn or veins and joints, the hair brushes full of patches and clumps of hair, the exhaustion, the tremors... I often find being a mermaid helps, hell just being in the water helps a lot! I hope you can find things that help you too. Really sorry you have to suffer through that

  3. #3
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    Multiple Sclorosis

    Thanks. ... It is frustrating for sure especially not knowing which part of my body is gonna turn on me and when
    Last edited by MermaidShannon; 01-23-2015 at 05:35 PM.

  4. #4
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    I sent you a message on your Raina hfx mermaid fan page

  5. #5
    Hi Shannon, I have MS. I was diagnosed at 20 and have been on preventative meds ever since. It has been a journey, that's for sure. I'm no doctor, but are you on any medication? I was rapidly progressing (couldn't walk, double vision, could use my hands) and after being medicated I improved drastically and now I'm stable.
    I'll be a Finfolk Mersister in January!

  6. #6
    Sorry if I'm awkward talking about it or what I ask or say isn't helping, I've actually never spoken to anyone else who has the condition and it's a little foreign. I'm happy to share stories and such, anything I can do to help. Xo
    I'll be a Finfolk Mersister in January!

  7. #7
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    Maressa I am so happy meds work for you! I am sorry you also suffer

  8. #8
    Administrator Pod of Cali malinghi's Avatar
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    I'm sorry to hear about what you've been going through. I hope we can give you some support. Although I totally encourage you to check out a dedicated MS support group as well.

  9. #9
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    Thank you for the support. Today I am extra upset because my hair is still falling out in gross amounts

    .

    Then I added to my stress by committing to a tail I know it will be a struggle to afford. I just feel like I deserve my own tail I buy all used and broken ones and id like one to fit just me especially if my health is deteriorating. What if I can't swim
    Or walk soon. So I did it. I charged up 3000 in debt on a new card which I only have the cash to pay off half all because I am so sick of being sick and
    I justified it by having a healthy coping skill. I don't really drink. I don't go out.

    Tonight. Isn't. The. Best.

  10. #10
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    The bald spot is in the front and it's getting worse. I need hair plugs to match my tail soon.ughghhhh

  11. #11
    Senior Member Pod of the Great Lakes Sabrina the Selkie's Avatar
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    So sorry you suffer! Good luck with your tail.
    Multiple sclerosis is a nasty beast. My mom works at a retirement community, and I spent a year working in the kitchen there. A few residents have MS. Heartbreaking.

  12. #12
    Senior Member Pod of Oceania Elle's Avatar
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    I've just finished a clinical placement and all of the patients that were there either had MS or Cystic Fibrosis. Being in a ward where everyone is between 20 and 40 is hardwork, particularly knowing that the CF patients usually don't make it past their 40s.
    "Will you walk a little faster?" said a Whiting to a Snail
    "There's a Porpoise right behind us and he's treading on my tail!"


    Tail making progress http://mernetwork.com/index/showthre...-making-a-tail

  13. #13
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    Well I'm glad I don't have that

  14. #14
    Quote Originally Posted by MermaidShannon View Post
    I suffer from multiple sclerosis and this helps me with my pain and to distract me with my deteriorating condition. I don't know anyone else with it and I haven't taken myself to support groups yet but I began early symptoms a few years ago and am in a more advanced stage.

    My hair just started falling out in clumps. My veins on fire. Sometimes I can't walk. Does anyone at all here have MS and can share experiences. I don't want to be a downer about health problems and all of that but if you wanna message me and keep it private I could really use some support from a mer. Private or right here is fine. Thanks
    Shannon
    Hello Shannon, I personally don't have it but my mother does and she has had it for about 13 years. I understand the pain and confusion. There are different forms of it and everyone is different. I have a neighborhood on only in her hands, my mom has it in her legs. The doctors now know so much more then they did when my mother was first diagnosed. You will get the best treatment, it is hard now but I can tell everyone here will support you


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  15. #15
    Senior Member Euro Pod Mermaid Crystal Shimmer's Avatar
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    So sorry to hear that Shannon and Maressa.. My mom had it and I lost her because of it. Every time I hear people about it I get sad. I really hope you find comfort in support groups or from the lovely people here.

  16. #16
    Senior Member Euro Pod Celaeno's Avatar
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    I'm glad you were able to treat yourself to that gorgeous Mike Van Daal tail! And that swim with the whale sharks looks like it was incredible!

    The area I grew up in has one of the highest instances of MS in the world, I know quite a few people with it. I'm so sorry you're dealing with this awful disease. I hope you find some relief in the mer community.

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