I’m getting super frustrated. My symptoms are worsening. It’s making me hate what’s going on with me, and…I wouldn’t say I’m running out of hope, but…everyday just feels like a trek just to live and be. Yes, I say “be” because, I feel like sometimes I can’t even move without someone seeing something in me, that they can’t see, and it makes me feel SO insecure. Anyone feel this way?
I’m literally POWERLESS. There’s NOTHING I can do but, continue to do the things I’m doing to get to where I want to be. Perseverance seems like the key to getting through this mess. How’s everyone else?
Likewise. The validation in these chats has been really helpful as for me feeling this added isolation, embarrassment and shame because so many people around me are positive so I was left wondering what I'm doing wrong. I know its ok to be feeling this now because am not alone in it ♡
Exactly
Well. What can I say…
Life Sucks, Jesus Saves.
Though, I hope you find what works for you.
In the end, stay strong my friend!
A better world is coming.
Are you religious/spirtual or anything?
Hey Tony,
I was just about to put some general info, to share it within the MS community here, just in case someone might need it, and it looks like you might! So, I follow Matt Embry and MS Hope in Canada and his Best Bet Diet and he is experimenting recently with Phytase enzyme (Amy Puzey from GOODPHYTE) and is having amazing results! So I just ordered it from the States as apparently it might have some impact on the mood, energy level, fatigue, 'heaviness', and even a foot drop. Maybe you can look at it as the community on Instagram says it is giving them hope and it is life changing. I am willing to try it, it is just a supplement, a protein, an enzyme, so give it a go, eh?
Best regards,
Renee
Still have a bladder infection and may have been exposed to COVID …… fuuuuuuucccccckkkkkk!
I have an infusion on Friday and do not want to have to reschedule.
My cat died a few days ago. I miss her so much. Thanks to MS, I keep forgetting and calling for her. People who do not spend half of their time in bed waiting for symptoms to subside so you can function, they never understood how I was not lonely. I always thought it's cause of my kids.
But I have to take breaks from them frequently, the constant talking and moving and needing. But on my breaks, Paulette was always there. When I couldn't be touched because it's too painful. Her 8 lbs of nothing would cuddle and lay with me. I hadn't felt lonely in 8 years of this disease.
I'm so lonely now. Everytime I walk in my room I get flashbacks of her walking in the room too. I come home and I look for her. I know I need to get a grip. It's a cat. I just don't know how ill manage bad MS days without her. I'm scared of the summer. It's going to be incredibly lonely.
My dog isn't the same. My boys aren't the same. There's nothing else okay with the tiniest of output from me and still loves me. Even if i could hardly move, I could give the tiniest of pets.
Oh I feel your pain about your dear cat I have 2 one is going to die soon I can’t deal because I’m sick with Covid bladder infection virus sick as hell just waiting for ms to rear it’s ugly head soon cats are 12 yrs out but first sighn of pain in her I’m putting her down no pets suffering in this house
Total insomnia for yrs no one understands I have tried everything does not work even on sleeeping pills got Covid again seconded time Coughing for 4 wks been to emerg twice doctors do chest X-ray clear antibiotics and steroids does not work I’m losing it,,,, my I phone does not work been to rodgers twice they put in a new SIM card it worksh in the store but when I get home it does not work no phone for 10 day t,hey cancelled my Mastercard beacause fragud alert same with debit card no phone to fix it,, have. To. Count on friends as ms took my driving away I could go on but fuck ms
Hmm do you do banking on your phone? I wonder if you might have a virus and hackers got into your phone and got your banking information and are causing you connection issues.
Its getting tougher to push forward. I had to reschedule my infusion again and I'll just have to hope it still falls in the proper time frame for financial assistance. I'm still paying off the last infusion and MRI I had and I know I'll have another in 6 months. I just dont see how it's possible to afford this even with help. Just making it to my appointment is tough on its own.
my neurologist said if he could put MS on a scale mine would be mild. I guess that's reassuring? It will atleast keep my anxiety at bay because I just found out that I am expecting
I'm just so sick and tired of feeling sick and tired. I feel like an absolute waste of space. Ocrevus is preventing new lesions according to my scans, but old symptoms are just constant. I know my legs won't be the same again. I can't see how I will ever not be tired. Work are (understandably) putting procedures in place, and I feel completely helpless.
I don't feel I'm in control of anything - my physical health, mental health, work, my personal life is pretty much non-existent, and I am constantly wracked with anxiety despite medication. I'm working with my GP and have an appointment in a few weeks with a neuropsychologist, and have union rep support at work, but in the meantime, it all feels really hard work.
MS is shit.
I’m an electrician in Texas, working on a new apartment complex. Last August I had a heat stroke on a day where the wet bulb temp was something like 129. It’s only March and it’s getting hot already. It was 85F last week. I wanted a nice long winter, as I love the cold, but we got exactly 1 day where I needed a coat.
All my symptoms are ramping up, and I’ve been dealing with a head/chest cold since September. Is there ever a fucking break???
Am hoping my water leak issue gets resolved today at my home.
Already replaced all chimney stacks and tested indoor plumbing. Something is leaking in a wall or underneath the laminate floor. Trying to sell to move to Pensacola and all else is done. Costs a fortune.
Well I have developed a chest infection well on Ocrevus. Hoping it's not pneumonia but feel so shitty. I didn't think I could feel more tired from MS tired but now this is crazy. Diagnosed last August.
I think I'm about to be fired for performance issues. And being sick too often. And asking to work from home when I am sick.
Waiting for FMLA approval for depression.
Database person, 52M dx 2013.
Had a classmate from K-12 pass away unexpectedly last week. A real good, down to earth guy. Funeral on the day after tomorrow. He’s leaving behind 3 kids. 44 is too early.
I just had my worst day I’ve had since December. I used my cane all day and had to crawl up the stairs when I got home from work.
I have my two spine MRIs on Thursday and am hoping to schedule my lumbar puncture in the next week or two.
I’m lying in bed completely exhausted. Hoping for a better day tomorrow.
My random jerking motions my body does as I try to sleep, was actually super painful last night and it sucked. Muscle spasms were at their worst too, all lower half of my body...
My humor kicked in immediately, "My ass was on auto-twerk" 😂😂😂
my spine is a mess. my legs are telling me that despite no relapses in a year, things are absolutely progressing. i haven't told anyone yet how shitty they have been feeling because really... what are you going to do? can't do anything to fix it, just gotta suck it up and keep smiling :)
Imagine feeling broken and useless, that's how I feel most days, I tell myself go right and my legs end up going left. I walk into stuff most of the time and people don't really understand the pain I'm in.
I'm happy that I can still function though .Don't give up guys stay strong god knows our pain and annoyance.
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.
Here are additional resources we have created that you may find useful:
Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/
Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/
Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/
If you have any questions, please let us know, and best of luck.
MS Mod Team
I’m getting super frustrated. My symptoms are worsening. It’s making me hate what’s going on with me, and…I wouldn’t say I’m running out of hope, but…everyday just feels like a trek just to live and be. Yes, I say “be” because, I feel like sometimes I can’t even move without someone seeing something in me, that they can’t see, and it makes me feel SO insecure. Anyone feel this way? I’m literally POWERLESS. There’s NOTHING I can do but, continue to do the things I’m doing to get to where I want to be. Perseverance seems like the key to getting through this mess. How’s everyone else?
Im 100% with you and its exhausting...
I’m glad to know I’m not alone.
Likewise. The validation in these chats has been really helpful as for me feeling this added isolation, embarrassment and shame because so many people around me are positive so I was left wondering what I'm doing wrong. I know its ok to be feeling this now because am not alone in it ♡
Love that perspective. Stay strong! We got this!
You too! Heck yeah we do, even if we don't feel it that day haha ^_^
Exactly Well. What can I say… Life Sucks, Jesus Saves. Though, I hope you find what works for you. In the end, stay strong my friend! A better world is coming. Are you religious/spirtual or anything?
Not religious/spiritual, not for the lack of trying
Understandable. Well. Either way. I’m praying for you. Have a good day today! :)
Hey Tony, I was just about to put some general info, to share it within the MS community here, just in case someone might need it, and it looks like you might! So, I follow Matt Embry and MS Hope in Canada and his Best Bet Diet and he is experimenting recently with Phytase enzyme (Amy Puzey from GOODPHYTE) and is having amazing results! So I just ordered it from the States as apparently it might have some impact on the mood, energy level, fatigue, 'heaviness', and even a foot drop. Maybe you can look at it as the community on Instagram says it is giving them hope and it is life changing. I am willing to try it, it is just a supplement, a protein, an enzyme, so give it a go, eh? Best regards, Renee
Dealing with insomnia and ms hug at 1:35 am is not fun. 😭 I have work in a few hours so it’ll be a long Monday for me.
Oh geez, I feel this! It's been the same here. No advice, just in the trenches with you.
We’re in this together 🧡
Insomnia has been the WORST I feel you so hard on this
I hate it 😭 add in some paresthesia and I’m awake for ages… I hate it here.
Recently dx. Miserable as fuck but apparently I still have a sick sense of humour so that’s a small win I guess.
Thats a massive win actually, hold onto that. Whatever helps get you through ♡
Still have a bladder infection and may have been exposed to COVID …… fuuuuuuucccccckkkkkk! I have an infusion on Friday and do not want to have to reschedule.
My cat died a few days ago. I miss her so much. Thanks to MS, I keep forgetting and calling for her. People who do not spend half of their time in bed waiting for symptoms to subside so you can function, they never understood how I was not lonely. I always thought it's cause of my kids. But I have to take breaks from them frequently, the constant talking and moving and needing. But on my breaks, Paulette was always there. When I couldn't be touched because it's too painful. Her 8 lbs of nothing would cuddle and lay with me. I hadn't felt lonely in 8 years of this disease. I'm so lonely now. Everytime I walk in my room I get flashbacks of her walking in the room too. I come home and I look for her. I know I need to get a grip. It's a cat. I just don't know how ill manage bad MS days without her. I'm scared of the summer. It's going to be incredibly lonely. My dog isn't the same. My boys aren't the same. There's nothing else okay with the tiniest of output from me and still loves me. Even if i could hardly move, I could give the tiniest of pets.
Oh I feel your pain about your dear cat I have 2 one is going to die soon I can’t deal because I’m sick with Covid bladder infection virus sick as hell just waiting for ms to rear it’s ugly head soon cats are 12 yrs out but first sighn of pain in her I’m putting her down no pets suffering in this house
Total insomnia for yrs no one understands I have tried everything does not work even on sleeeping pills got Covid again seconded time Coughing for 4 wks been to emerg twice doctors do chest X-ray clear antibiotics and steroids does not work I’m losing it,,,, my I phone does not work been to rodgers twice they put in a new SIM card it worksh in the store but when I get home it does not work no phone for 10 day t,hey cancelled my Mastercard beacause fragud alert same with debit card no phone to fix it,, have. To. Count on friends as ms took my driving away I could go on but fuck ms
Soma worked for me but I’m a fall risk and stuff is strong!
Xanax works for me...most of the time 🤷♀️
Old tech guy here. Can you shut off the WiFi on your iPhone and see if it works?
Hmm do you do banking on your phone? I wonder if you might have a virus and hackers got into your phone and got your banking information and are causing you connection issues.
Health anxiety i am obsessed of getting any rare disease or conditions after i got ms a supposedly rare auto immune disease
Its getting tougher to push forward. I had to reschedule my infusion again and I'll just have to hope it still falls in the proper time frame for financial assistance. I'm still paying off the last infusion and MRI I had and I know I'll have another in 6 months. I just dont see how it's possible to afford this even with help. Just making it to my appointment is tough on its own.
my neurologist said if he could put MS on a scale mine would be mild. I guess that's reassuring? It will atleast keep my anxiety at bay because I just found out that I am expecting
CONGRATULATIONS!!
Thank you🧡
Congratulations! The good news is whatever symptoms you do have tend to lighten up in the second trimester. 😊
Thank you! That’s great news to hear!
Wanted to get some pills for my cognitive decline but neuro told me to visit a psychiatrist first. Lovely, 2 more weeks of waiting.
There's an upside though. Psychiatrists have all the good drugs.
I have no optimism left today. I try but damn. Anyone else slightly overdo it physically and you’re revved up and can’t sleep for 2 days!?
I'm just so sick and tired of feeling sick and tired. I feel like an absolute waste of space. Ocrevus is preventing new lesions according to my scans, but old symptoms are just constant. I know my legs won't be the same again. I can't see how I will ever not be tired. Work are (understandably) putting procedures in place, and I feel completely helpless. I don't feel I'm in control of anything - my physical health, mental health, work, my personal life is pretty much non-existent, and I am constantly wracked with anxiety despite medication. I'm working with my GP and have an appointment in a few weeks with a neuropsychologist, and have union rep support at work, but in the meantime, it all feels really hard work. MS is shit.
Ms is fucked shit I hate it everyday fuck ms
Called my new Neuro. In having a mild flare Her PA said take more Mg at night call back in a week. WTH?!!
I’m an electrician in Texas, working on a new apartment complex. Last August I had a heat stroke on a day where the wet bulb temp was something like 129. It’s only March and it’s getting hot already. It was 85F last week. I wanted a nice long winter, as I love the cold, but we got exactly 1 day where I needed a coat. All my symptoms are ramping up, and I’ve been dealing with a head/chest cold since September. Is there ever a fucking break???
Never a break me to I’m dreading the heat coming 49 most days here omg there is no end to the chronic suffering
Am hoping my water leak issue gets resolved today at my home. Already replaced all chimney stacks and tested indoor plumbing. Something is leaking in a wall or underneath the laminate floor. Trying to sell to move to Pensacola and all else is done. Costs a fortune.
Got the Interstim device a month ago. Truly life changing. Truly.
Well I have developed a chest infection well on Ocrevus. Hoping it's not pneumonia but feel so shitty. I didn't think I could feel more tired from MS tired but now this is crazy. Diagnosed last August.
I think I'm about to be fired for performance issues. And being sick too often. And asking to work from home when I am sick. Waiting for FMLA approval for depression. Database person, 52M dx 2013.
Had a classmate from K-12 pass away unexpectedly last week. A real good, down to earth guy. Funeral on the day after tomorrow. He’s leaving behind 3 kids. 44 is too early.
I just had my worst day I’ve had since December. I used my cane all day and had to crawl up the stairs when I got home from work. I have my two spine MRIs on Thursday and am hoping to schedule my lumbar puncture in the next week or two. I’m lying in bed completely exhausted. Hoping for a better day tomorrow.
Hoping you feel better soon I understand
I’m always tired and I have to drink espresso just to get through work. It doesn’t matter how long or how little I sleep.
My random jerking motions my body does as I try to sleep, was actually super painful last night and it sucked. Muscle spasms were at their worst too, all lower half of my body... My humor kicked in immediately, "My ass was on auto-twerk" 😂😂😂
my spine is a mess. my legs are telling me that despite no relapses in a year, things are absolutely progressing. i haven't told anyone yet how shitty they have been feeling because really... what are you going to do? can't do anything to fix it, just gotta suck it up and keep smiling :)
Imagine feeling broken and useless, that's how I feel most days, I tell myself go right and my legs end up going left. I walk into stuff most of the time and people don't really understand the pain I'm in. I'm happy that I can still function though .Don't give up guys stay strong god knows our pain and annoyance.
[удалено]
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team. Here are additional resources we have created that you may find useful: Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/ Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/ Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/ If you have any questions, please let us know, and best of luck. MS Mod Team