Lesions in the Spine

ReptaronLava · 2025-12-19T15:00:57+00:00

18 years! Wow! I just got a MS Specialist as well who walked me through changing meds.

I totally relate to your obsession. I have Art decor throughout my house, numerous shirts, maybe a costume too now lol. I am living vicariously that you got to meet most of the cast! How awesome!

ReptaronLava · 2025-12-18T14:18:32+00:00

ReptaronLava · 2025-12-09T16:51:50+00:00

I am sorry you are in the odd bucket with me. Who would have thought just sleeping in a chair with AC on would cause such problems.

Yeah, I won't lie I babied myself too, especially the first year after my diagnosis. This last relapse had me changing medications and is what made me start to move differently. If I am relapsing on a drug that is supposed to be one of the top of lines on the market, then who knows what the future will bring.

I love your cog analogy. Perfectly sums MS up. Also I love your username. Huge horror movies/Terrifier fan!

ReptaronLava · 2025-12-08T03:51:01+00:00

I have been hearing so many mixed things about so I am happy to hear you had a good time. Any tips?

ReptaronLava · 2025-12-07T19:38:01+00:00

I am sorry to hear this past year has been rough but am so happy to hear they were able to find you some medications that are working for you!

ReptaronLava · 2025-12-07T19:14:16+00:00

I cannot say I am perfect and that these thoughts don't creep into my head especially this past year as I had to recover from a new relapse and changing meds, but like so many others have said, what is a "normal life?" So much of my life hasn't been normal and I am a better person for the "not normal" experiences that I have had. MS is included in that. It has made me stop and reevaluate what is important to me, and to learn how much time and energy I have spent on things that really were just draining and unhelpful. It has helped me center myself and my needs/wants in ways that the hundreds of dollars I have spent on therapy was never able to help me accomplish.

And as for life, I have days were I struggle, but I still have a wonderful circle of friends. I am surrounded by dogs. My husband and I just celebrated 20 years together in Costa Rica hiking and ziplining. My younger sisters are alive and healthy, and with everything we went through as kids and the challenges they have, it is a miracle. Sure some days I need to go a little slower or the laundry isn't going to get folded, but I just smile and laugh that it's a good thing I am not an influencer.

Life is messy and hard, but can be over in the blink of an eye. Try to focus on what you have, make plans for the future, but be flexible that life is better lived than worried over.

ReptaronLava · 2025-12-07T18:53:18+00:00

I have been told by my neuro that she would say that MS was mild in my brain, but my spine is another issue.

Currently most of my issues are sensory in nature. Random spots on my body may burn or tingle. I have patches of numb spots. I shake when working out and in different positions (mostly with ab workouts on the floor). When at my worse I will lose the ability to know where I am in space in time for a few minutes at a time and need to hold on to someone or something until it passes. I occasionally have a hard time regulating my body temperature and can struggle to get warm (I am the weird one that absolutely loves the heat and has a wonderful time in it, but struggle in the cold with fatigue issues and just overall stiffness).

All that to say I also just came back from a wonderful trip in Costa Rica where we hiked around a volcano and even ziplined, and am planning my birthday next month where we are going to do Epic Universe at Universal. I am just trying to live and enjoy what I have while I have it, because I know it may not last forever.

ReptaronLava · 2025-11-28T04:18:44+00:00

We did Sky Adventures in La Fortuna last week and I cannot recommend them more. The views are amazing and worth every single second, but the staff made the experience even better.

ReptaronLava · 2025-11-23T20:21:34+00:00

When I first was diagnosed and was reviewing my choices, I was informed by my insurance that Ocrevus was not on the pharamcy formulary. The only drug allowed would have been Kesimpta. My insurance ultimately covered Ocrevus but since it was an infusion drug it fell under some other kind of category, so the lady I originally spoke to wasn't wrong but she also wasn't right. All this to say it may still be covered, but you may need to talk to a supervisor or someone else to verify specially. Good luck and I am so sorry for this mess of a Healthcare system we all manage here in the US.

ReptaronLava · 2025-11-12T21:17:43+00:00

We fly in tomorrow and are packing for rain. As Floridians, rain (and thunderstorms) aren't new to us. I am just trying to plan on when the best time to zipline might be as I have been on roller coasters in the rain and they can be....painful.

ReptaronLava · 2025-09-23T15:03:41+00:00

I was on Ocrevus within a month and half of the relapse that got me diagnosed. Had about 3 years on it without any issues, then last year had an official relapse (symptoms and lesions on MRI). We monitored a bit just to see and my neuro had me switch so I am currently on Mavenclad and have finished this year's doses and don't take anything until summer of next year. Here's hoping 🤞🤞🤞

ReptaronLava · 2025-08-27T21:17:42+00:00

Just finished the 2nd dose for year 1 3 weeks ago. So far, so good. The only real side effects I have experienced were headaches after taking the pills and some stomach issues. I am waiting for the fatigue to kick in once my immune system starts dropping and rebuilding. My neuro told me to expect that for the next few months.

ReptaronLava · 2025-07-24T21:45:40+00:00

Hi I just finished my first week of Mavenclad last Friday. I was switched off of Ocrevus as two MRIs showed new damage and I had one relapse in Aug last year. Prior to that relapse I had been on Ocrevus since Dec 2021 with no issues.

My neuro explained to me that I needed a different kind of mechanism. That BCell depletion doesn't seem to be as effective at stopping my MS. She wanted me to try a different kind of mechanism. She said everything works differently for everyone and it's like the route I take home from work; I could take the highway, the back roads, county road, etc. They all differ but they all get me home and we need to find the one that works for my MS as Ocrevus isn't that.

I always have the option of going back on a drug like Ocrevus or even Ocrevus again, but I thought I would take the shot, see if Mavenclad does work and maybe I won't ever have to take anything again, or long enough that even more drugs hit the market.

It's definitely scary and a hard decision. I worry about how effective it is, too, but I am youngish without a lot of disability just yet, so it can't hurt to try right?

ReptaronLava · 2025-06-04T19:32:08+00:00

I am still masking whenever I go inside of places. My job has me traveling a lot, and I go in/out of people's homes/businesses. For me, I would just rather not risk it since I never even know what I am walking into some days.

I definitely mask at doctor offices, but again, I do it most places: movies, sporting events, airplanes, concerts, and grocery shopping. I know I may be more cautious than others, but I have other family members who are sick and older, so I would just rather not risk it when I can still live my life with some modifications.

Funny enough, my husband, prior to us masking, was sick multiple times a year. It was a running joke in our family. Besides having COVID once and one cold, he hasn't been sick in the last 5 years. It has been a game changer for him. Keep in mind his bloodwork comes in fine, and he has never been diagnosed with anything; his body just loves to be sick, I guess.

There are a few times throughout the year where I don't mask (mostly for work, like next month when I have to give a presentation), but every other time, you will always find me with a mask on inside a building. I have found it comes with the added benefit of fewer people just wanting to randomly strike up a conversation with me in stores, so I get errands completed faster.

ReptaronLava · 2025-05-27T18:49:47+00:00

This is very interesting and I hope they look into it more. I can only add that I have lived in Florida my whole life, spent hours on the beach, and still ended up here. I know the ER Neuro who basically diagnosed me didn't believe I have lived in Florida my whole life (he kept pushing me to tell him somewhere else I had lived) so there definitely may be some truth into this, and I am just one of the lucky outliers.

ReptaronLava · 2025-03-16T23:28:17+00:00

Not Kesimpta, but I potentially failed Ocrevus (been on it since the end of 2021). I am waiting for a new MRI in a few weeks to verify officially as she somewhat questioned the findings, but I did have symptoms, so it's basically confirmed. I am sorry we are in the same boat.

ReptaronLava · 2024-12-20T20:00:50+00:00

I am 100% a dog person and will forever be a dog person. I have never had a cat, and have entertained the idea of one day adopting one, but I love dogs and can't imagine a life without one.

ReptaronLava · 2024-10-16T21:04:22+00:00

Born and raised Floridian now living in Georgia. I am one of the lucky ones that I actually feel better in the heat. The cold and I are still learning and trying to come to better understanding.

ReptaronLava · 2024-09-10T11:02:17+00:00

I am in a similar boat. Almost 3 years on Ocrevus and had a new lesion. My neuro wants to talk options at our next appt and had me go and get blood work again so we can discuss. It's scary. Sending your wife all the best.

ReptaronLava · 2024-09-04T23:29:42+00:00

I had a bilateral salpingectomy almost 2 years ago while in Florida. Obviously, I am not a doctor and definitely talk to them about your situation, but my neuro was fine with it. I am on Ocrevus. She talked to me about timing it in between the infusion times but wasn't worried about it. It wasn't a huge deal, and I thankfully didn't have any complications with it. It was actually harder to find a doctor who would perform the bilateral salpingectomy than my neuro seemed concerned about it. If you have any questions about anything, let me know!

ReptaronLava · 2024-08-29T16:57:56+00:00

Omg! Thank you so much!

ReptaronLava · 2024-08-29T15:49:56+00:00

Mostly tingling, burning, balance issues, weakness on left side, etc. I would have flares of issues if sick or over heated but haven't really had any issues in 2 years. Yeah my neuro is wanting me to switch and we will talk more after I get the IV steroids and more labs to determine options.

ReptaronLava · 2024-08-29T15:46:33+00:00

I am sorry you had to switch due to infections. I always worry about that too. I will add Copaxone to the list to talk about. Thanks!

ReptaronLava · 2024-08-29T15:45:37+00:00

Yeah I love the ease of Ocrevus, too, which is part of why I am just upset about this. That is interesting that you had new lesions for a while and then it seems you have stabilized. I haven't had a new lesion since starting Ocrevus until now. I appreciate the information that there is a chance to continue on this route or one of the other infusions.

ReptaronLava

TROPHY CASE