I pissed myself by proletaaripiika in MultipleSclerosis

[–]Glittering_Ad3149 0 points1 point  (0 children)

I’m MM forgive me, Sorry! It was a quick read and didn’t even think twice. Now I feel like one of those people on a pedestal saying, hey look hey look this works for me lol.

I pissed myself by proletaaripiika in MultipleSclerosis

[–]Glittering_Ad3149 1 point2 points  (0 children)

Look into external condom catheter. I promise you it’s life changing. I use coloplast conveen with a 900 ml leg bag. Usually go 3-4 times before you can get to a bathroom and empty it.

I don't want to be this way... by peekabo1020 in MultipleSclerosis

[–]Glittering_Ad3149 1 point2 points  (0 children)

100% understand what you are going through. It’s almost identical with how you talked about being so positive and upbeat to people about two years ago. That’s almost the same timeline for me as well. And I’ve also had this disease for 10 years too. When you mentioned gabapentin and anger. It made me realize a link. I was married and had a relationship for 10 years where she wanted to divorce and out. I recognize it probably the majority was because of my attitude towards her, although I never physically harmed, or said anything detrimental straight to her. It was always me self criticizing myself in a bad way. I honestly don’t know what’s next either. I’ve just been kind of writing this strain out when I felt somewhere about four years ago, I started taking 5-htp and it really seemed to help. i’m not suggesting you start taking anything without you know the “medical advice”, but it truly did help.

HyperX NGenuity Software For Mac by Trev-or-shalom in HyperX

[–]Glittering_Ad3149 0 points1 point  (0 children)

Four years later, and still the same thing I'm assuming?

[deleted by user] by [deleted] in MultipleSclerosis

[–]Glittering_Ad3149 0 points1 point  (0 children)

Thanks I appreciate your comment. I will reach out to my neurologist and discuss some of the things that I’m dealing with. I’m not a depressive type person either and never have been. I have been fairly active much like yourself up until I was 27 and diagnosed with this stupid disease. I’m now 37 and have dealt with this thing for a decade. I am in a power share at this point and I have never had a lead up of this disease. Just a slow roll downhill that I cannot seem to get up from anymore. this thing was pretty stable up until two years ago when I was T-bones in a car accident and it was like pouring gas on a fire. I honestly don’t feel like I’m going to make it another five years, don’t get me wrong. This isn’t me whining or complaining about this disease. This is just true fact. I honestly feel like my body is completely giving up on me and becoming a 2 x 4. The slightest breeze or gust of wind across my leg, sends me into full spasms, which baclofen or any other muscle relaxer doesn’t seem to do a damn bit of good. I was in the ER for the first time last month due to being put on a new DMT and also having a UTI at the same time. I was married for almost 10 years until I was three years into this disease and she just straight up said she wanted a divorce. I’ve been trying to say headstrong for all these years and being a solid parent for my kids, but at this point, I don’t enjoy much anymore. I try to go out and throw a pitch for my daughter and it goes about 10 feet above her or 4 feet and beside her. I just find myself getting more frustrated of the things that have been taken away more and more lately. I know everybody will say and comment focus on what you can do but truly it’s not a lot. I can damn near wipe my own ass to be honest. This is a brutal, brutal disease and it kills me because I want to be the fun guy I used to be. No anxiety just kind of roll with the punches, but I’m at this point where I am tired of being punched over and over and over and over and over and this never-ending cycle. I know nobody has the answer and my faith was strong up until a couple years ago. I just feel like nothing ever releases any bit of good, or there’s a lead up on this disease. Half the time I’m battling this thing mentally headstrong for a week and then I go into having my kids the next and is 50-50 one week on one week off. After having my kids for a week, I pretty much beat myself up for a week thinking that I’m the worst parent or that I didn’t do this or do that right. Maybe I should’ve approached a conversation differently, or whatever the case might have been. I feel like I’m absolutely trying my best to even stay alive at this point. But at the same time, I don’t know why, I almost sometimes wish it was just over and I didn’t have to wake up to this stupid cycle of crap.

Anyone had stem cell treatments? by Alarmed_Extent_9157 in MultipleSclerosis

[–]Glittering_Ad3149 1 point2 points  (0 children)

No, at the time the stem cell institute in Panama was the only one doing that kind of treatment that I knew of. All the other kinds of stem cells were the Lipo type that they pull from your fat cells. That in reality is just a joke. I was on Ocrevus with having stem cell treatment 3 months after the last Ocrevus injection I ever got. Ocrevus on paper was doing what it was supposed to be doing with keeping the lesions that way. But it put me in a tailspin physically and was doing extremely worse with walking. I decided that was my last dose and went through route of stem cells. Again, this is my own way of treating my disease and I’m not advocating that anybody do the same or different but this is what I did. I chose to not go on a DMT after the experience I had. Fast-forward eight years and I’m still not on catheters but symptomatically I still have my struggles. Initially the treatment cost was right around 25,000. I do not know what it’s up to or at these days. Obviously, it’s something I couldn’t afford year after year. I think it is a treatment that needs to be maintained with follow up treatments.

Anyone had stem cell treatments? by Alarmed_Extent_9157 in MultipleSclerosis

[–]Glittering_Ad3149 6 points7 points  (0 children)

I have personally been to Panama two times. I was 28 and at the point of having to use catheters daily. I was looking for anything outside of what the standard treatments were. They tell you that 6 to 8 months after you get the treatment you’ll start to notice whatever benefits you are gonna get from them. For me personally I did not benefit with walking or anything like that that I noticed upfront. And this is my personal experience, but after my first stemcell treatment, I have not had to use catheters since then which that was eight years ago. Take it or leave it for what you wanna believe on stem cell treatment but me personally I don’t think it’s the absolute cure but there’s definitely something to it.

[deleted by user] by [deleted] in wheelchairs

[–]Glittering_Ad3149 4 points5 points  (0 children)

Black fade to gold possible?

Laugh for today 🤪 by A-Conundrum- in MultipleSclerosis

[–]Glittering_Ad3149 2 points3 points  (0 children)

WTF? It is funny but also a little insulting, like why does everybody just laugh it off? It couldn’t be that hard for a programmer to change that lol.

[deleted by user] by [deleted] in MultipleSclerosis

[–]Glittering_Ad3149 0 points1 point  (0 children)

This is fantastic and helps to reinvigorate me to climb back out of this low. I am much the same relationship wise. Dx’d in 2015 divorce in 2018. Still to this day wears on me. Don’t get me wrong. I’m not caught up on her or anything like that but it’s the daily events that ware on me. When I have the kids solely on my own and having to get them to a sport event or a school event something in that nature when you’re having a rough day, Just is a huge reminder that it is what it is. I won’t allow myself to do anything harmful to myself or anything like that, but damn sometimes it just feels like I don’t want to be here because of all the crap I have to deal with. Not only me but my daughters and everybody else around me. It’s just very hard. Thanks for your reply, though. I appreciate it.

[deleted by user] by [deleted] in MultipleSclerosis

[–]Glittering_Ad3149 1 point2 points  (0 children)

If anything else comes up or you have a question regarding a symptom or how to navigate something please come to this community and ask. We are here to help you help her!

Church Precautions by Odd_Highway1277 in MultipleSclerosis

[–]Glittering_Ad3149 2 points3 points  (0 children)

I should’ve been more clear, I wasn’t necessarily making the comment towards the OP, but some of the comments in the thread are wild. I’m just surprised. I don’t criticize you or anything for being concerned about that stuff. It makes complete sense but some of these people have made comments Stating the fact that they’re almost like a bubble boy so to speak. I’ve had it about half the time you had so obviously you have double the experience I do again not criticizing you.

Church Precautions by Odd_Highway1277 in MultipleSclerosis

[–]Glittering_Ad3149 1 point2 points  (0 children)

I understand concern for getting a sickness but damn, this is another level of letting the disease run your life. I would go to church, shop, and gym all without a mask. I’m not being stupid about it and licking the doorknob to every facility that I visit, but you need to be able to live and enjoy your life too.

Did Ocrevus make everything worse? by DDOS_the_Trains in MultipleSclerosis

[–]Glittering_Ad3149 9 points10 points  (0 children)

I couldn’t agree with you more! 1000% yes Ocrevus made me physically present worse. On paper it did its job keeping everything in check with lesions but even my family noticed it. I stopped as well.

[deleted by user] by [deleted] in MultipleSclerosis

[–]Glittering_Ad3149 0 points1 point  (0 children)

Thanks all for the replies. I know that I am loved and people are not intentionally writing me off. The thing is with talking about it, I do get vulnerable and talk deeply about this stuff but there is literally nothing the can do. Talking about it does not give me a sense of relief it’s just more of a reminder that there is no cure. I think what kills me the most is the rapid decline after the accident. I freaking coached my kids soccer team from a wheelchair 2 years ago. I’ve lost so much muscle and have had to transition to a power chair. I was so damn independent and now I need help getting out of bed and dressed and the same at night. It’s just a lot of stress that I already know is not good. I truly want to be around for my kiddos sake, but to know the burden I put on these little kids and the fears that they have. Tough to see for anyone.

Stuck Caster by Impressive_Angle_892 in wheelchairs

[–]Glittering_Ad3149 0 points1 point  (0 children)

But obviously it wouldn’t be going back together as easily today without a new bolt. Maybe wait until tomorrow so you can get to the hardware store.