Hi, my name is LoraKae! I've just been diagnosed with Myelomalacia. Anyone else? — Scope | Disability forum
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Hi, my name is LoraKae! I've just been diagnosed with Myelomalacia. Anyone else?

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LoraKae
LoraKae Community member Posts: 3 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hello, I’ve just been diagnosed with Myelomalacia. I’ve had two ACDF surgeries. The most recent Dec 9, 2021. This started Aug 24,2020 with my legs giving out, my whole body going totally numb. I could hardly walk. I couldn’t control my limbs. Electric shock feeling from the base of my skull to my toes. The Dec 9th surgery helped with some of that, but now they say I have Myelomalacia, but has not really went into details about what it is exactly. My hands and arms are still totally numb and legs are extremely weak. I’m having extreme tingling in my neck shoulders and throat, when it occurs it feels like it’s seizing up or paralyzing me for a few seconds. I’m also having shortness of breath. The Neurologist doesn’t think it has anything to do with the Myelomalacia. I’m afraid it does. Does anyone else have any of this. Is this a serious problem? I go back to my neurologist tomor and am going to demand more  information.
Thank you
Lora

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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community Feel free to join in or ask any questions 
    I am sorry to hear about your situation we are here to help you any way we can 
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Hello @LoraKae - welcome to the community & thank you for joining us all, Lora. I'm sorry you're having such problems; I have some neurological problems too, but different to yours (due to a genetic disorder). Do you have any support at home, & will someone be able to go with you to your neurology appointment tomorrow?
    As Jane mentions, this is a very supportive community, & we do help each other as much as we can. Glad you found Scope. :)
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  • LoraKae
    LoraKae Community member Posts: 3 Listener
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    Thank you. I’m sorry for what your going through as well..Yes My husband is very supportive and his mother will be going with me tomor.

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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Thank you for your kind reply @LoraKae - great to read your husband is so supportive, & your mother-in-law will accompany you tomorrow. As well as moral support, I find you can remember what has been said if 2 of you are there; 2 heads are better than one in remembering it all. My son usually goes with me to Drs; what I don't remember he usually does (tho we've both got not the best memory!) It sort of helps as we have the same genetic disorder, tho we present quite differently. Kindly let us know how you get on tomorrow, thank you.
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Welcome to the community @LoraKae :) Thanks for joining. 

    Those symptoms sound difficult to handle, so I'm sorry you've had to go through this. Someone on the community did post about having myelomalacia back in May, but I'm not sure if they're still around or not.

    Please let us know how your appointment goes today! I hope that you're able to ask the questions you want to ask, and that they're able to get to the bottom of what's causing those lingering symptoms.

    Just to let you know, I've renamed and moved your post to make it a bit easier to find. 
    National Campaigns Officer, she/her

    Check out our Playground Accessibility Map
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  • LoraKae
    LoraKae Community member Posts: 3 Listener
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    Thank you, Much appreciated!
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