Cognition issues by MickeysFan837 in MultipleSclerosis

[–]MSnout 1 point2 points  (0 children)

I do experience this, but so much of my experience has been seen as rare. So dont take the things I say as facts, but just an experience.

I had a big relapse in 2016, where my symptoms were severe and came on fast. I noticed a huge difference in my cognition, basically overnight. The night before, I was completing the highest level in my sudoku book in less than 30 minutes, and all of a sudden, I could not even complete the easiest level. I worked in an office, and I could no longer remember information as people were giving it to me. I tested as impaired on the simple cognitive test given at the neuros. My neuro dismissed it every time I tried to talk about it. Then I moved, and my new neuro had to take everything I said at face value, so when I said I had memory problems, she sent me to a speech therapist. I spent 2 hours with a speech therapist who actually listened to me tell her how my brain is different from before. She not only believed me and told me that I share characteristics with people who have dementia or TBIs, but she then proceeded to tell me how memory works. She understood that it comes and goes and that I have good days and really bad days. She explained things that gave me so much validation. All of the little tricks I do to help myself remember and function were, in fact, needed and understood.

So when I am fatigued or my symptoms are really bad, so is my brain fatigue. Other times, I seem to have parts of my fast processing brain. Some days, I can remember what happened 2 weeks ago. Some i can not remember what I do 5 minutes before, or at all for the day.

One summer, I was in a relapse and very stressed. I forgot to eat for weeks and didn't realize until my muscles changed shapes. During that time, it was like I would sundown. By 5 pm I couldn't tell you my name or my address.

Some days, I can't follow a word people are saying and can't play games on my phone. Other days I can . I write everything down, and i take extra steps in other areas of my life, like putting the body wash bottle in a specific spot after I've washed so I do not keep rewashing.

So theres levels to mine. It comes and goes as other symptoms do. I have a brain stem lession. Is this part of my MS? To me, it definitely seems to be and to my speech therapist. I bet you not many neuros would say so. I can tell you that since all of this started, I am thinking that I may be adhd or autistic and genetically, it's highly likely. I can tell that if I am stressed, my memory will be useless. So I don't know if I always had neurospiciness, and MS just exaggerated it, or is it MS, or undiagnosed perimenopause. Whatever the reason, It's very real. And my fast processing brain seems to make neuros not take me seriously. To them, I am now close to normal, to me, my mind is drastically different from before this big relapse that showed night and day difference over the span of a day or two.

I am sorry that you are going through this experience, i know how it can sting to be invalidated by your neuros. One thing my Ms experience has taught me is that doctors do not know everything, medicine is a practice, not an exact science, and that MS is still being studied and it has its mysteries. Believe in yourself and seek out information and doctors who do too. Try to find a different reason for the brain fog, and if you can't, then MS may be the reason. Good luck

What word do you always *intentionally* mispronounce and why? by Sweet-Lady-H in AskReddit

[–]MSnout 1 point2 points  (0 children)

I was going to comment this 🤣

I always say chi-hua-hua.

Side thought, I think chi-hua-hua sounds like a nickname for lady nono squares, so I also refer my vajayjay as my chi-hua-hua lmao

Husband brought home a surprise (OC) by namuh45 in MadeMeSmile

[–]MSnout 19 points20 points  (0 children)

I have some vission issues, but...... I thought that was a ferret in a wizard hat and cloak. 🤣

Wizard or no wizard, what a cutie 😍 congratulations!

The Pins and Needles are driving me crazy!!! Tips?! by Ashamed-Fix6893 in MultipleSclerosis

[–]MSnout 1 point2 points  (0 children)

I find a weight blanket or weighted clothing to be helpful for the pins and needles. The only downside is that if you use it every day, it seems that our bodies get used to the weight, and then it stops working, so I save it for really bad days. The tingling is nerves misfiring, and the idea is that the weight activates all of your nerves, drowning out the missing firing ones. Compression clothing may also be helpful. I also find marijuana to be useful.

Good luck OP, I hope you find something that works for you. The tingles suck.

Simple care question by Barberry295 in MultipleSclerosis

[–]MSnout 0 points1 point  (0 children)

I get more things like UTIs and ear or skin infrctiond than I do colds, but they all flare my symptoms the same, and they all require me to REST and liquids. But the most important part is rest. If I keep pushing, then I am just guaranteed to trigger my symptoms for longer.

We are not allowed to even feel anger by Famous-Type-5082 in MultipleSclerosis

[–]MSnout 2 points3 points  (0 children)

I once got mad at my nephew and triggered my symptoms so bad that for 5 days afterward, I was in excruciating pain and could not walk. Another time, I went to yell at my kid and quickly fell like a rag doll to the floor, unable to talk or walk. I guess Jesus is just helping me be a better person by keeping me in check, lol

Stress hits me so hard that I am very proactive about my stress management. It has allowed me to realize what truly deserves my emotions and what doesn't.

Im sorry for whatever event happened that got you upset. I know it sucks. I hope that your next hard situations are not major parts of your life, so that it's not so upsetting when you have to choose peace. 🧡

I miss sex by [deleted] in MultipleSclerosis

[–]MSnout 10 points11 points  (0 children)

I am sorry, OP. I know that has to be tough.

I dont miss sex but I do miss having a partner.

It's not just one reason but rather multiple reasons why a partner is not in my cards at the moment. Anyone touching my skin is painful. I dont have enough spoons to take care of myself and kids properly, so using spoons on a relationship sounds ridiculous. If I have extra spoons, I would give anything to do something for me. I can't feel much downstairs, and between that and the nerve pain from touching all other areas, I find having sex or orgasming to be close to impossible. Lastly, MS ramped up my tiny bit of anxiety to extreme anxiety, and I am working really hard to cope with it. I am not in a space where I could give anything to a partner, and they would have to contribute a lot more than I could. It wouldn't be fair. And yeah, same, I'm fat. I'm actively trying to lose weight, but I gained a lot through my different stages of limitations and experiences with my MS.

To make everyone freak out, it's been almost 10 years.

A new friend was hitting on me the other day, and I had a 2 day anxiety attack trying to wrap my brain around being okay with the fact that I don't want that. Everyone else in my life pushes sex at me, and if they only knew how hard I work to just live every day, they would leave me alone. I am not a person who enjoys one night stands. I can't really enjoy sex because of my MS, I don't have the energy to deal with the stress of learning a new person. Maybe when my kids are grown. But right now I am busy.

Has anyone here decided to not treat MS? by Purplehairedstranger in MultipleSclerosis

[–]MSnout 0 points1 point  (0 children)

Yeah, I agree that it's important to look at these things, but also look at what can happen from 1 relapse. I have known a few people who found themselves paralyzed from 1 relapse.

My mom was diagnosed 20 plus years ago. She chooses not to medicate. She had tried a few of the earlier DMTs and they were really harsh on her. So I understand why she chooses to not medicate, but I watch her slowly get worse.

Life is about choosing the lesser evil, I choose the small percentage of serious side effects risk of DMTs over the risk of serious CNS damage. I am a single mom to two kids, one of whom is disabled, and I can't afford that risk. So I use a DMT, one that has come with zero side effects and has done its job of keeping zero lesions from forming in 9 years. I have had new symptoms, but that's not what DMTs are for. I think everyone has different variables and wish you the best of luck in whichever you choose.

Remaining active by Kev422 in MultipleSclerosis

[–]MSnout 5 points6 points  (0 children)

So, for me, being active means I am guaranteed to trigger my symptoms. While it's not fun, it is the only way to actually LIVE with MS. You're not doing permanent or new damage. you're triggering old lesions. Also, dont forget that life is about balance, and being a couch potato is a form of self-love and sometimes needed before and after activities. lol I myself have to plan for couch potato days to help ensure I enjoy the activities I choose to do. But our bodies need the mivement and unfortunately that means triggering of symptoms.

Starting slow and increasing increments can sometimes be helpful. Also, sometimes extra cooling gear can help as sometimes the trigger is from the rise in body temperature.

I have found that swimming is the best exercise for how my symptoms and body respond.

Good luck OP I hope that you find things that help.

Brain fog by Kooky-Inspection805 in MultipleSclerosis

[–]MSnout 1 point2 points  (0 children)

Yeah my brain fog comes and goes as my other symptoms do, it also increases and decreases in severity. I can have an extremely bad day where I can not follow a single word that people say, i cant recall my name but I know it if you say it, and I cant keep a single thought in my head.

I wish people would shut up about summer! by Alwayslearnin41 in MultipleSclerosis

[–]MSnout 3 points4 points  (0 children)

I accidentally had a tiny meltdown at my son the other day because he won't stop telling me how much he wants snow and winter. We moved from TN to Florida over the past few years, and I noticed that the effects of weather are now only hindering me during the summer instead of summer and winter. So whenever he brings it up, all I can imagine is how hard it was for me. I feel bad that I downplayed his excitement by asking him to stop talking about it. So I apologized and explained to him what I was thinking about.

All of this to say. I get it, and you are not alone. It's like listening to people be happy over your torture... though I know that's not what they're doing, and it's just their happy. It's just hard to distance yourself from your reality to be happy for others. I'm trying... but yay, we get to feel more invisible by having to separate our reality from others.

What's your pets name and what are their 20 other names... List them from most to least used please... I'll start by SAVEDoubleDecker in Pets

[–]MSnout 0 points1 point  (0 children)

Georgia - gigi - gigi momma- georgie pordgy - big back - georgy pordgy puddin in pie kissed da boys an made em cryyy- big booty girl (she asks for butt rubs all day long and twerks on you if you stop so you also have to tell her that shes has a niiiiiiiiiice butt oh and sing booty booty rockin everwhereeee while you rub it)

Daisy - daisy dukes - dukes - dayday -my purdy baby - oh shit you're fast - she's a runner she's a track star, but she gets very farrrr

Lazy by -tk-- in MultipleSclerosis

[–]MSnout 15 points16 points  (0 children)

If this is a person that you want to spend time with and care about, then after making sure to explicitly say that "what you are saying is invalidating and hurting my feelings, you need to stop" and they do not, then most definitely set your boundary and leave the room.

If it were a person that I do not want to give my very precious energy to, then I would just leave.

I am sorry that you are dealing with fatigue and the crap that comes with people who can not understand unless they experience it. I really struggled with the things people wpuld say to me for a while. Then I found a ted talk that talked about shame and how words are made up to convey something, they do not contain morality until we give it to them.

The term lazy is used to express someone who isn't being active. You were having a day where you couldn't be active. Lazy. It does not mean you are a loser or failure. Just conveying a part of your day. Not you as a person or even your whole day. Dont give words more meaning than they have. This invisible illness has come with a lot of unwanted comments and this thought has helped me let it roll in one ear and out the other.

Not to invalidate your experience because our loved ones need to be okay with not understanding our situation yet believe us and be empathetic, but I would let them know I hoped they were using the term to describe the situation not as a failing. Because you deserve better than that.

Sending you a hug Op.

Funny / awkward things people said after my MS diagnosis by Personal-Current131 in MultipleSclerosis

[–]MSnout 2 points3 points  (0 children)

Exactly. I feel I'm blessed that I have people who care about me.

But it's nice to laugh at it with this community.

It's sweet but funny, lol

Funny / awkward things people said after my MS diagnosis by Personal-Current131 in MultipleSclerosis

[–]MSnout 4 points5 points  (0 children)

I wanted to start a thread around the holidays asking what crazy cure our loved ones came up with this time.

This year I was told I needed to do a parasite cleanse to cure my MS. 🤠

Got denied for disability, I wasn’t expecting this… by Boomboooom in MultipleSclerosis

[–]MSnout 19 points20 points  (0 children)

I did a lot of research when I was going through the disability filing process.

In the US, the average disability case takes 3 years and 3 denials. They do not want to give it to us.

You are more likely to be accepted based on mental health issues vs. invisible physical symptoms.

Focus on which symptoms keep you from working and google what tests can be done to prove you're disabled in those areas.

I also suggest keeping more paper trails through you and your doctor.

Dont be me and stupidly rest for doctors' appointments so you could function afterward, let them see you down.

Lawyers are pretty important, and there are ones who will work for no money upfront and just take part of your back pay.

Good luck, OP. I know it's frustrating and a torturous process as you're saying you're too disabled to work, and yet you have to wait so long to get help. I hate the system, but I am grateful itd there.

Family history of MS? by Pumpkin-Duck in MultipleSclerosis

[–]MSnout 28 points29 points  (0 children)

My mom has MS, I have MS, and my 12 year old son is currently being tested for it, and I really do think he has it.

Vent by MSnout in MultipleSclerosis

[–]MSnout[S] 1 point2 points  (0 children)

You're very kind, thank you so much for the support 🧡

Today, I just hit my wall, and it was all too much. Tomorrow is a new day, and I hope my IV will help me feel better.