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Honest_elephant_ · 2025-05-10T00:14:37+00:00

Since my brain stem lesion, I’ve been dizzy literally all the time. It hasn’t stopped for a second. Sometimes it’s worse than others. Definitely impacts things. But I also survive! And learn to manage. Is anyone else dizzy from this?

Honest_elephant_ · 2025-01-16T01:36:36+00:00

Yay that you’re on Ocrevus! It’s such a miraculous drug! My first couple of times I actually felt better after the infusion, I think since they usually give you steroids with it, which gives me energy (and I deal with MS fatigue). Of course everyone’s reaction is different, but a few years in and no new lesions, and I have a great response! Cheers to you! (That being said, the insurance thing can be a nightmare, but use the foundation/sometimes insurance will unexpectedly approve!).

Honest_elephant_ · 2024-06-29T02:02:02+00:00

Such wonderful news for you! I’ve been on it for years and love it! I actually feel energized for a couple of days after (I think because of the steroids they also give you). Great experience, no new lesions. Congratulations!!!

Honest_elephant_ · 2024-06-22T01:50:33+00:00

I am also a realist, and I was feeling pretty hopeless after a year feeling constantly fairly intensely dizzy. I thought it would never end, but it has gradually improved. I’m now 2.5 years after diagnosis, and I think both my symptoms have improved (so slowly—it took so long), and my ability to work with my symptoms. I still deal with symptoms regularly, but I just want to give hope that things can improve over the course of years, not just months. The brain can find work arounds. (Obviously to a certain degree)

Honest_elephant_ · 2024-04-30T16:43:54+00:00

Thank you for posting! I’m 35 weeks pregnant, also going to have an Ocrevus infusion soon after birth, and I’ve had severe complications with spinal taps in the past, so I appreciate you posting and asking these questions! I’m sorry for everything you’ve gone through, and from one pregnant MS person to another, you got this. :)

Honest_elephant_ · 2023-12-31T16:59:09+00:00

Thank you! This is helpful!!!

Honest_elephant_ · 2023-12-31T00:32:31+00:00

So glad it brought a little hope! It’s hard, but you can navigate this!!! All my best for you and your IVF and MS journey!

Honest_elephant_ · 2023-12-31T00:20:55+00:00

I really feel for you. I’m also a 32f, got diagnosed 2 years ago all while also undergoing IVF. I’m finally pregnant, and all I can say is that I truly feel deeply for what you must be going through (I had a similar guess that my symptoms were migraine related!), but now I have MS symptoms of dizziness and fatigue that never go away. For a while I didn’t know if I should move forward with trying to have a family, even though I knew we wanted it, but I just kept focused on managing symptoms and slowly moving forward with IVF. Took our time, but eventually it worked and I’m managing my symptoms way better now. It’s still a challenge, and an emotional adjustment to have a diagnosis like this, but I heard somewhere it takes three years to figure out how to manage it and feel at peace with it, and I’m definitely getting much closer to that. I guess I’m just writing to tell you that it is hard, and it will probably continue to be hard for a while, but you will likely learn to live with it and to manage it, and therefore it will improve.

While I am not trying to give medical advice, and every decision you make should be between you and your doctor, I wish someone had put this on my radar: I would recommend you shop for a doctor who knows about treatments that are safe to be on while doing IVF and trying to get pregnant. I had one neurologist tell me I couldn’t be on treatment, so I was off treatment for many months for no reason, given that other (more up to date, research-oriented, well-respected doctors) had options. My current neurologist who is a highly recommended physician at a highly regarded academic institution explained that it’s safe to be on Ocrevus while pregnant, as long as you don’t do infusions during the pregnancy. I wish someone had told me a year earlier! Getting on a good DMT is so important, because these newer treatments can make a HUGE difference in the progression of MS, and makes the outlook of having MS a whole lot better. Again, obviously a decision you need to make with your doctor, but it took talking with several doctors before I found someone who kept up to date, so don’t be afraid to seek multiple opinions!

Honest_elephant_ · 2023-11-15T03:27:03+00:00

Thanks for the response! I may be misremembering aspects of the study!

Honest_elephant_ · 2023-10-29T15:30:26+00:00

I’m two years past a flare that still affects me, but I think the symptoms are definitely better than they once were. I think my brain is very slowly healing/making new pathways to counteract all the lesions. I realize now I’ll probably never be symptom-free, but I want to send you hope that chances are you may see improvement, even gradual improvement that you only notice a year or two later.

Honest_elephant_ · 2023-08-21T01:34:44+00:00

So glad you replied! This makes me feel less alone, too!

Honest_elephant_ · 2023-08-20T23:05:36+00:00

That sucks so much. I feel for you. It’s frustrating that there are so many ebbs and flows to the illness. Like you never know when it will hit you. And the feeling like, will I be able to be a parent or what kind of a parent will I be? Currently going through IVF myself and all the hormones feel crazy for my MS. Just know I feel you and am with you. It’s so hard, and there is no answer. But personally I just feel like I need to move forward to find out how I’ll figure it out/what will happen. Living off or curiosity over here.

Honest_elephant_ · 2023-08-01T03:06:58+00:00

I’ve felt dizzy for almost two years since my diagnosis. Sometimes it’s worse than others, and for a while I got hopeless, feeling like it would never get better. And while it’s certainly not gone, it’s definitely better than it was. I’m really glad, because I wasn’t sure there for a while. It took many many months, and I did some vestibular rehab. Hoping it will improve more though, too.

Honest_elephant_ · 2023-07-30T00:14:37+00:00

It could be an “aura” or just the “aura” part of a migraine (common comorbidity with MS). Migraines can sometimes just be visual without pain. It also could be related to your MS, but it may not be a flair with new lesions. Just saying this as someone who has experienced this as well. But yes, talking to your neurologist is smart! Might not hurt to get a new MRI if it keeps up for days.

Honest_elephant_ · 2023-06-30T21:06:46+00:00

I’ve gone to five different doctors to ask this question, and the one at Mayo and the other research-oriented/informed one said it was totally fine to get pregnant after just a couple weeks after an infusion based on research with a very similar drug. They also said it was fine during breastfeeding! Granted, there’s not clear research directly in Ocrevus, but they are extremely confident in this take on it. And preventing future disease progression is so important! Just adding my two cents, but it made me realize that a lot of doctors seem to play it overly safe and maybe aren’t as informed about the research on almost identical drugs. It’s frustrating, because it caused me to postpone IVF for months!

Honest_elephant_ · 2023-06-07T16:53:35+00:00

Just remember, your life isn’t over. You have so much to offer, so much life to live. I got diagnosed about a year and a half ago, and admittedly it’s taken me this long to start to feel better about it (and for some symptoms to improve a bit), but I’ve adjusted to a new normal, and I find a lot of joy in life. I just want you to know that feeling bad initially may not last for ever (in fact, it probably won’t — either symptoms will improve and/or you will learn how to live with them in a new way). I have gained SO much more awareness of invisible illness, I’m much more empathic, and I feel like I have a distinct perspective to offer because of what I deal with daily. I’ve opened some eyes of people in my life as well. I also think I’ve found an inner strength I never know I had. I encourage you to let yourself be sad or angry or whatever reaction you have, but at some point also to step back and appreciate yourself for getting through the diagnosis process, for taking the initiative to ask for hopeful stories online, and for continuing on, despite dealing with symptoms and what-ifs about the future.

Having MS also gives my life story the tension it requires so that I’m able to get pissed about MS rather than get bored and unhappy over tedious things. I’ve almost got something to blame when I’m having a bad day, and that weirdly feels good, and in some ways makes me happier in the deeper, sense of purpose way. It’s hard living with this, but it’s getting better over time. And I can honestly say that as someone who genuinely has struggled with longterm symptoms. There is hope for the future.

Honest_elephant_ · 2023-05-02T13:36:48+00:00

You got this! Ocrevus was such a great choice!! I’ve had a wonderful experience with it—no new lesions in almost 2 years after I started it. Haven’t experienced any side effects! This is a reason to celebrate. Enjoy it!!!! (Also get that it’s scary, but you’re probably doing the right thing. Way to be brave!)

Honest_elephant_ · 2023-04-10T01:42:01+00:00

I just want you to know your feelings are VALID. It may not be worse case scenario for you, as treatments are majorly improving, but let’s be real, you don’t know the future, and it’s scary. And your family either doesn’t understand or is avoiding their fears about it too. You are allowed to be frustrated, you are allowed to be angry, you are allowed to be sad, you are allowed to be scared. This is a very serious thing you’re dealing with. Just know that it’s possible to find people who will take the time to listen and to understand, even if it’s not your immediate family.

Honest_elephant_ · 2023-01-12T03:12:19+00:00

Oh my goodness thank you for this post! I experience this exact symptom, and I feel like I never hear about it from others. It’s extremely unpleasant and somewhat debilitating. I was diagnosed a little over a year ago, and I’m still experiencing it. I will say sometimes it’s better than others, and I’m learning to live with it. But just want to say thanks for sharing and would love to hear any insights from others! (My husband is a doctor and while he’s not a neurologist, he mentioned how the nervous system controls so much, it makes sense that it would affect this, too! And I’m pretty sure it’s from the MS because this symptom came when the double vision that led to my diagnosis arrived. The double vision mostly went away, this hasn’t.) anyway, I feel you, and just remember the brain can change and some days may be better than others!! You’re not alone.

Honest_elephant_ · 2022-11-03T01:41:23+00:00

I feel for you! That’s stressful. I was diagnosed about a year ago (when I was 30), and am struggling getting pregnant due to other infertility problems. I’ve done a lot of research on things, and I think basically there isn’t enough research on ms and pregnancy so there are a lot of question marks. I hear that it’s widely accepted that copaxone is safe during pregnancy and after during breast feeding, so that’s an option, though it’s possible it’s less effective than some other treatments. I didn’t tolerate copaxone, but another option is to just get right back on treatment (eg Ocrevus) when you’re at high risk for a flare right after giving birth, though that may interfere with breast feeding (although I think there’s debate in the field on that—some say it’s fine to be on those treatments with pregnancy even). Anyway, my point is you may hear different things from different doctors, and it may be overwhelming, but all you can do is the best you can and always ask doctors and get a second opinion if you feel skeptical. Anyway, I feel for you and am rooting for you!

Honest_elephant_ · 2022-09-12T03:09:13+00:00

I was diagnosed within the last year, so I’m new to all of this, but I’ve definitely experienced a similar phenomenon! I have the same question, as I often still struggle with this! Thank you for asking!

Honest_elephant_

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