There’s an earthquake happening inside my body – Today’s guest blogger on MSAA’s MS Conversations

When someone mentions multiple sclerosis, a lot of people immediately think of numb body parts, walking difficulties and fatigue. Those symptoms are fairly well known, but there is so much more to this disease and so many more struggles that we endure daily – sometimes silently – that should be talked about and shared….

Read today’s post at MS Conversations:

http://blog.mymsaa.org/theres-an-earthquake-happening-inside-my-body/

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About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

51 replies
  1. Lynda Wilton says:

    I have just started to experience the ringing in my ears the past couple months. I didn’t even realise it could of been my MS. So much has changed for me recently. I am finding it hard to follow conversations in groups when several people talking at the same time and lots of background noise. As always some days are better than others and it definitely makes a difference to be around people that don’t judge you.

  2. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    I know what you mean. Back in 2011 we had an earthquake that demolished our city and it first felt like I was having an attack from MS, but it wasn’t and after 10.000 + shakes I am still here

  3. Regina Langa Barry says:

    Wow. This hit home in a BIG way! It’s hard to describe to people because it sounds like complaining. I am in an active phase now and the itching is horrid, the differing of drooling, the spasms. Argh!! I would win an award for the most sleep in a month though…

  4. Donna Mills says:

    I’m 68 and have had MS for 24 years. I live in the wrong part of the country El Paso Texas. We’ve already been in 3 digget temp since May. I have tremors all day with itching and fatigue . My hands hurt so bad there hard to open most times. Xanax helps some during day but at 8pm I take out my pipe and smoke cannabis, not to get high but to help ease pain and sleep without taking any more pills I hate pills

  5. Barbara Crawley Adams says:

    Thank you, so many of these are me and have been for so long. I had no idea it was MS. When I was diagnosed, I was shocked. Now I know it is MS. I woke up in the middle of the night the other night with my hand just shaking like crazy and I had no control. It finally stopped and I went back to sleep. This time I knew what it was. The itching is driving me crazy though. It is constant.

  6. Marsha Bell says:

    Me too! The ear things, the crawling bugs, the water drips, icy bones on fire sensations, optic neuritis, numb-tingles, tremors so painful and out of control it caused hospitalization once, and daily pains and migraines and hellish hugs that’s “normalcy” now. We are MS strong!!!!

  7. Cassie Willis McChesney says:

    Do any of you deal with after walking or doing something physical that, that body part has this weird electric feeling that makes it weak but it almost tickles? I have been having this in my left leg recently in my my thigh. It’s almost like an electric vibration. I deal with the ear ringing and drumming noises, the random water sensation, and the itch that bounces from one spot to another. Pretty blessed over all. Heat is the devil.

  8. Emma Edmunds says:

    Have just started getting what I can only describe as a feeling like me arms and hands are just on the verge of shaking and twitching but never actually happens. Just feels literally like an earthquake about to happen! The bugs on skin has been awful too
    ..feels like they are nipping at my legs all the time! People probably think I need sectioning when they see me whacking invisible bugs!!!

  9. Kathy Buys says:

    MS @ times challenges your self esteem greatly. Then to deal with them quietly is in itself tough. I sometimes feel the morning prep is endless & you still feel unsure of worth. How I wish I could go back 37yrs & relive those hurdles, I did well. These new ones are tough & im doing the best I can.

  10. Valarie Ann Hartnell says:

    Thank you for sharing! I love reading your post. They are very true and real and I love the humor!!!!

    I’ve had ms now since 2008 and my does it get annoying mostly bc of the management and meds and well invisible illness thing that everyone does not get, but I have learned to find humor and add some more to it when necessary!
    People that don’t get ms I am aware that they shouldn’t have to understand bc it’s not them dealing with it, but we people with ms we don’t even understand it but we continue to try! Thank u all for sharing your stories and finding hope that we are not alone and all are different but living the same

  11. Lori Young says:

    Oh my goodness so much Yes. The water trickling down is the strangest to me. And the ear flutter is always there and most annoying is absolutely the itch you cannot stop. All of this!! My pinky and ring finger on right hand are always ice cold as well as right foot. All of it is enough to make you moody but add the You look great- and I want to scream or cry. Not every day most days I find my inner bumblebee self and press through. But today is not that day. Thanks for sharing this Penelope!!

  12. Davida Fine says:

    I have a constant feeling that there is water in my left ear, and I hear strange noises in it too. Something akin to a wet sponge drying out. And other times it feels like it is completely blocked, when that happens I can’t hear anything outside, but internally I can hear everything. But I still have my sanity, for now

  13. Dara Jasumani says:

    I used to get the water or blood running down my cheek. And the same with my left leg. It has virtually gone now. I’m not sure if it’s the gabapentin or the exercises that have helped but whatever it is that feeling has gone …. for now!

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