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  • What is the most frustrating or difficult aspect of living with MS?
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Living with Multiple Sclerosis

What is the most frustrating or difficult aspect of living with MS?

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avatar Courtney_J

Courtney_J

Community manager
Edited on 08/24/2020 at 4:46 PM

Good advisor

avatar Courtney_J

Courtney_J

Community manager

Last activity on 08/08/2022 at 11:09 AM

Joined in 2020


1,339 comments posted | 96 in the Living with Multiple Sclerosis group

6 of their responses were helpful to members


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Hi everyone,

How are you doing? emoticon cute

Adjusting to life after being diagnosed with multiple sclerosis can be challenging. It requires becoming more aware of the limitations that your body will experience and the lifestyle changes that these changes will force upon you. These adjustments my impact every aspect of everyday life; from basic mobility, to relationship dynamics with family and friends. The nuanced list goes on, but let's hear from you!

What is the most difficult or frustrating aspect of living with MS? How do you cope with this or these challenges? Is there anything you miss about your life pre-MS? Do you have any advice to share?
@Brinahbaby92‍ @dimples854‍ @makaylah76904‍ @SherryT‍ @sma5153‍ @NancyT‍ @Rayne86‍ @Jayn1122‍ @cindy.wms1962‍ @msjoye‍ @Star0789‍ @Kellyteal‍ @Emma2190‍ @PennyEllyson‍ @Shithead‍ @Russso‍ @Eistot‍ @ak2663‍ @jacquie‍ @Katrina2864‍ 

Feel free to share your thoughts and experience here! 

Take care,
Courtney

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avatar BWroke

BWroke

05/06/2022 at 10:31 PM

avatar BWroke

BWroke

Last activity on 07/17/2025 at 11:02 PM

Joined in 2019


14 comments posted | 14 in the Living with Multiple Sclerosis group


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@Eistot Sorry to hear of your troubles. I am 76 with MS. My wife died 3 years ago and now I am all alone. I live out in the country in Texas. I really like it out here glad to not be in the city. I need to use a walker and I am not all that steady and have fear of falling because I can not get up on my own. I am finding more and more That the mental part of the MS is the hardest to deal with. I also wish there was a home or a meeting to go to. (I think misery likes company.) Sometimes I look around and see people that are in worse condition then I am and it makes me feel lucky that I am doing as well as I am. I got on a dating site thinking I could find a lady that could take me as I am. Well, It's all I see are women that want to go dancing or hiking in the mountains. Soo that aint going to happen. So I try to keep busy doing what I can do. Going to the mail box is a trip for me. Hope things get better for. Keep me informed. Bob



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BW


What is the most frustrating or difficult aspect of living with MS? https://www.carenity.us/forum/other-discussions/living-with-multiple-sclerosis/what-is-the-most-frustrating-or-difficult-aspect-of-living-with-ms-2407 2022-05-06 22:31:47

avatar cpoetess53

cpoetess53

07/11/2022 at 4:32 PM

avatar cpoetess53

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Last activity on 08/05/2022 at 2:26 PM

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4 comments posted | 4 in the Living with Multiple Sclerosis group


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Feeling hopeless. No cure in my lifetime. No let up. No empathy for the sick and infirmed and handicapped. This is the most difficult, dealing with one's limitations.


What is the most frustrating or difficult aspect of living with MS? https://www.carenity.us/forum/other-discussions/living-with-multiple-sclerosis/what-is-the-most-frustrating-or-difficult-aspect-of-living-with-ms-2407 2022-07-11 16:32:49

avatar DebraBeyer

DebraBeyer

07/11/2022 at 8:00 PM

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avatar DebraBeyer

DebraBeyer

Last activity on 05/17/2025 at 12:09 AM

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21 comments posted | 8 in the Living with Multiple Sclerosis group

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Losing mobility is the worst part of MS. I would love to walk again and do all the things my legs want to do ie, ride a bike, drive my car, play sports etc.


What is the most frustrating or difficult aspect of living with MS? https://www.carenity.us/forum/other-discussions/living-with-multiple-sclerosis/what-is-the-most-frustrating-or-difficult-aspect-of-living-with-ms-2407 2022-07-11 20:00:57

avatar Juneliakakos

Juneliakakos

10/07/2022 at 6:47 PM

avatar Juneliakakos

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Last activity on 10/07/2022 at 6:41 PM

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1 comment posted | 1 in the Living with Multiple Sclerosis group


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I miss being able to be as social as I use to be. I am very light sensitive and don't go out as much. I also have trigeminal neuralgia so that is a beast in itself. I also get more exhausted. Now the dizzy spells are hitting me like crazy and my walking is off balance not to the point I'm necessarily going to fall yet but enough to be concerning. My vision goes in and out of focus like a camera. I'm just having to learn my limitations and it gets frustrating compared to the old me that was always on the go and now I'm always on the slow down let's smell the roses.


What is the most frustrating or difficult aspect of living with MS? https://www.carenity.us/forum/other-discussions/living-with-multiple-sclerosis/what-is-the-most-frustrating-or-difficult-aspect-of-living-with-ms-2407 2022-10-07 18:47:28

avatar Elk217015

Elk217015

03/14/2023 at 8:37 PM

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avatar Elk217015

Elk217015

Last activity on 07/27/2025 at 9:25 PM

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10 comments posted | 7 in the Living with Multiple Sclerosis group

2 of their responses were helpful to members


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The most difficult thing for me right now is having MS right now and have had more pain and difficulty walking in the last couple of months! I don't have an MRI until the end of May & 6 month follow up in June!!! I just feel like It's been downhill since I had a heart attack in July 2021


What is the most frustrating or difficult aspect of living with MS? https://www.carenity.us/forum/other-discussions/living-with-multiple-sclerosis/what-is-the-most-frustrating-or-difficult-aspect-of-living-with-ms-2407 2023-03-14 20:37:26
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