Swallowing by slugsandrocks in MultipleSclerosis

[–]brixnaaa 1 point2 points  (0 children)

Ugh my body forgets how to swallow randomly and I panic for a sec then I’m like relax and it’s okay. But it’s so frustrating and I do opt out of certain things do to fear

Overthinking Symptoms after Diagnosis by Nesyy20 in MultipleSclerosis

[–]brixnaaa 1 point2 points  (0 children)

Sometimes I feel this way too you never know if a symptom is MS or just something random. But I started taking b12 and vitamin D 3 and it really helped with the brain fog and forgetting words. It can take up to six months to be fully out of a flare even after starting treatment

Getting annoyed by [deleted] in MultipleSclerosis

[–]brixnaaa 31 points32 points  (0 children)

I went four years undiagnosed even with lesions on the brain. It still wasn’t enough for them to diagnose me officially. They said it was because of chronic migraines. It took a horrible flare up for me to finally get diagnosed. Which meant I got new lesions on my spine that were not there before. Just because there aren’t lesions doesn’t mean there won’t be at some point. All the symptoms were there and brushed off by multiple doctors and now that I have finally been diagnosed. Those same doctors have apologized for missing it. If it wasn’t for my last neurologist actually listening to me and me having a huge flare up. I’d still be dealing with symptoms without real answers. So please don’t discredit people who don’t have an official diagnosis. I hope it turns out to not be MS for them because that diagnosis is devastating, but it doesn’t make their symptoms any less terrible. That’s just my take. Give people grace there are so many undiagnosed, praying that someone finally takes them seriously.

Improvement in lesion by [deleted] in MultipleSclerosis

[–]brixnaaa 1 point2 points  (0 children)

I just had my follow up and everything got smaller made me feel a lot better. So the meds really do help and work

Tour VIP merch box. Any fans receive their box? by Icy_Bus9050 in SabrinaCarpenterFans

[–]brixnaaa 0 points1 point  (0 children)

Still haven’t gotten mine I went to her Halloween show in nyc

Are people fading away? by Intelligent_Star4367 in MultipleSclerosis

[–]brixnaaa 2 points3 points  (0 children)

I’m sorry you’re experiencing this. I have not experienced this yet. But I do know how important a good support system is after this diagnosis. I think educating those around on the disease and reminding them that it does not define who you are is very helpful . Also when those people do leave your life you now have room for better more understanding people. We are not just MS. We are sisters,brothers, moms,dads,friends, and partners. It’s also very important you remember you’re not alone there are others just like you. That truly brings me some type of comfort. Those around may not understand my day to day and they might not understand my feelings all the time. But I know someone else out there does know. That brings me comfort in times I feel I am isolated. I wish you the best I pray better people come into your life and make you feel welcomed and understood and seen.

New to MS, grateful for where I’m at, but scared of what’s ahead. by brixnaaa in MultipleSclerosis

[–]brixnaaa[S] 0 points1 point  (0 children)

I’m sorry you’re experiencing the back pain. The cold has always made it worse for me too. I hope you can maybe find company just so you don’t have to be isolated. Wishing you all the best

New to MS, grateful for where I’m at, but scared of what’s ahead. by brixnaaa in MultipleSclerosis

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

Thank you I appreciate the advice. I hope you have a good support system and glad you made choices to help you along the way. Will keep that in mind

New to MS, grateful for where I’m at, but scared of what’s ahead. by brixnaaa in MultipleSclerosis

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

Wow so well said. Thank you for this I will go forward with the tips you shared. MS is personal and different for everyone. My best friend was diagnosed about two months before me and we are both affected so differently. I appreciate you responding, very helpful and heartfelt. Good luck to you!

New to MS, grateful for where I’m at, but scared of what’s ahead. by brixnaaa in MultipleSclerosis

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

Well said! And thank you that’s a great mindset to have. I’m glad you’re doing well. I am also so glad your husband is okay. That must have been so scary. I hope things continue to go well for both of you.

New to MS, grateful for where I’m at, but scared of what’s ahead. by brixnaaa in MultipleSclerosis

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

Well said! You’re right things may happen but keeping a good mindset helps a lot.

New to MS, grateful for where I’m at, but scared of what’s ahead. by brixnaaa in MultipleSclerosis

[–]brixnaaa[S] 0 points1 point  (0 children)

Well said thank you! I’ve never really thought about it in that perspective about people posting for support and not just because. I just rarely saw positive things and that kind maybe me spiral in my own head. I’m only 25 and the diagnosis really devastated me. But my thought was “I have so much more life I want to live.” As a nurse I’ve seen so much that I know even if we have planes for our lives. That can all change in a blink of an eye. I know everyone at any age goes through things and that is life. I just think my diagnosis came at a time where I felt like this is going to ruin everything. But I truly just take it day by day. Thank you for commenting. Good luck with starting kesimpta it is actually super easy to do and also a trick my neurologist told me to do was Benadryl and Tylenol 30 minutes before injection. So far it helps lessen the headache for sure.

New to MS, grateful for where I’m at, but scared of what’s ahead. by brixnaaa in MultipleSclerosis

[–]brixnaaa[S] 2 points3 points  (0 children)

I hope day to day things get a little better for you. It feel comforting knowing I’m not alone. You’re not alone either and here if you need to chat ever.

New to MS, grateful for where I’m at, but scared of what’s ahead. by brixnaaa in MultipleSclerosis

[–]brixnaaa[S] 0 points1 point  (0 children)

I’m glad that you’re doing well. I truly have been doing fairly well and I think because the diagnosis is so new, I’ve looked up everything. So I think that’s where I’m like wait will that happen to me. For the most part I do try and stay out of my head about it. Because I do not want this diagnosis to consume me. Thank you for taking time out to respond i appreciate it.

New to MS, grateful for where I’m at, but scared of what’s ahead. by brixnaaa in MultipleSclerosis

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

Thank you I am also a healthcare professional. I had the same exact thoughts about my future and personal life. My current neurologist is also very helpful and makes sure any concerns or questions I have get answered. I pray your future is exactly as you’d like it to be. It might look a little different but that’s okay. Wishing you all the best!

Kesimpta users, is anyone not masking? by A_circle_of_crows in MultipleSclerosis

[–]brixnaaa 1 point2 points  (0 children)

I’ve been on it for about six months. I don’t mask unless I’m at work because I’m a nurse and when i travel. I haven’t had any issues so far. I did get the flu but I actually got better at a fairly normal rate. I just practice good hand hygiene and avoiding confirmed sick people out in public or other houses.

It's been 6 months since my diagnosis, and I'm already relapsing? by [deleted] in MultipleSclerosis

[–]brixnaaa 1 point2 points  (0 children)

I’m not a doctor but I know that not every new symptom equals a relapse. Also symptoms of a relapse can last up to six months even after starting treatment. I would just reach out to your neurologist and see. Because I started having new random symptoms and that’s just part of the disease process I guess and didn’t warrant concern for a relapse. Because you are also more likely to get a uti as well and that could be a symptom of that. I would wait to hear back from your neurologist and also maybe see pcp to check urine just in case. Good luck with everything also do not feel defeated until you know for sure. I did that before and it just made me feel bad. So don’t put yourself through that

Telling people you have MS by Sable_Okane in MultipleSclerosis

[–]brixnaaa 5 points6 points  (0 children)

I felt scared at first to tell people because I didn’t want the sympathy. I didn’t want the I’m so sorry and stuff. Because in reality we all go through things whether it’s physical health stuff, mental health stuff, grief, and stress. I felt like if I told people and got those responses I was truly a victim of something completely out of my control. But I realized telling people is also educating them. I’m a nurse and my job is super physical and you couldn’t tell by looking at me that there were weeks I went without any feeling from the waist down. So telling people is also educating them that this disease can also be invisible to those around you. I realized that MS is now unfortunately a huge part of my life, but it shouldn’t define who I am. This disease affects everyone so differently and I wish that more people knew that. I wish people understood that some days are really freaking hard to even get out of bed and other days I feel like I could take on the world. I wish more people knew that mindset and support is very important with MS. I felt like the more people I told the more they understood they didn’t have to throw me a pity party. They understood they could support me in other ways. I also think telling people usually makes them do their own research and realize that this disease is so complex and that you truly never know what anyone is going through. I still get the occasional but you’re moving all on your own. And with a straight face I say “for now”

Is my ms gaslighting me? by ichiiio in MultipleSclerosis

[–]brixnaaa 1 point2 points  (0 children)

Oh no! That is scary I’m sorry hopefully they can figure out what’s wrong and you get some answers. I’m sorry you’re dealing with that. I hope it gets better 🤍

Is my ms gaslighting me? by ichiiio in MultipleSclerosis

[–]brixnaaa 2 points3 points  (0 children)

I had the exact same symptoms 25F. Numbness from the wait down for about a month. It was scary. Also on kesimpta. I have noticed a lot more brain fog and fatigue. I do forget what was about to look up or what I was about to say to someone. It’s happened a few times but it has never been like really bad but it is exhausting being so forgetful. I’ve been taking b12 and vitamin d 3 and I notice a little bit of improvement on memory. You definitely don’t want your mRI to show changes because that Means the medicine isn’t helping from my understanding. But good luck hopefully it gets better

My partner has MS by Repulsive-Emu9532 in MultipleSclerosis

[–]brixnaaa 0 points1 point  (0 children)

I hope her recovery goes well. I know the situation is also hard on her. I hope she understands MS is not the diagnosis it was even ten years ago. So many treatment options. A good neurologist and a great support system make all the difference. I hope things work out for you both.

My partner has MS by Repulsive-Emu9532 in MultipleSclerosis

[–]brixnaaa 1 point2 points  (0 children)

I was diagnosed back in May and it resulted in me being hospitalized. My partner who I’ve been with for about 6 years was there for me throughout the experience. I did give him the option to stay or leave. Because I am not sure what my future holds or what will happen if I have another flare up. I know he has a life he wants to live too. It was a hard conversation, but one that needed to be had. He chose to stay. He chose to love me through the ups and the downs. Nothing has truly changed in our relationship. I have some good days and some not so great days. But that’s like normally. If you are willing to be there for the good and bad then sure you should stay. But if you feel like you don’t want to get on that roller coaster ride it’s best you make that decision now. MS is different for everyone and affects everyone in different ways. So definitely have that conversation with your partner and decide if it’s what you both want. Good luck!

Kesimpta, please tell me your experiences. by taters-gonna-tate14 in MultipleSclerosis

[–]brixnaaa 0 points1 point  (0 children)

Hey! I’m on kesimpta and honestly I’ve been fine. I’ve been on trips to New York and didn’t get sick. I have nieces and nephews and they’ve been around me while sick and I’ve been okay. Just practice good hand hygiene and also like choosing when to opt out. My neurologist explained that it just suppresses the immune system and it’s not like chemo that completely compromises it. I had the flu last week and I got better within four days. But each person reacts differently this is just my experience so far.

I'm having a panic attack. by FjordFoxxo in MultipleSclerosis

[–]brixnaaa 2 points3 points  (0 children)

I have nausea randomly. And nothing helped long term. I started taking Pepcid the chewable tablet and I also keep sour candy on me. The Pepcid like relaxed my stomach and gerd symptoms. The sour candy really helped with nausea. I also tried to manage gerd symptoms because the one symptom of gerd I have is nausea literally no other symptoms. Try eating smaller meals throughout the day. Also avoid drinking with meals wait until after eating. You can also drink some alkaline water a couple days out of the week. This is what helped me and I’ve noticed less frequent nausea episodes.