A year of Multiple Sclerosis and a positive outlook

[brux]

Because I brought it to the board initially, I thought maybe I could share an update now that I'm about a year into Multiple Sclerosis. 

No need to reply, just wanted to share because I'm a chronic oversharer and also a very nosy person, so I'd want to know if I was on the other side of the screen :-)

After having weird symptoms beginning Feb 2023, I went through MRIs, spinal taps, bloodwork, various doctors and then in May 2023 was diagnosed with MS. 

I got insurance approval to begin medication in July 2023, which was a big relief because it's one of the newer more powerful MS drugs that has the goal to prevent future "relapses."  Relapses with MS are the result of your immune system attacking your brain and/or spinal cord, causing lesions which may cause a wide variety of symptoms.  The relapses could result in temporary or permanent disability.  And the more relapses and lesions you get, the more accumulating disability is likely.  But with the new classes of MS drugs, it seems like there's a good change of kicking a lot of the "bad" MS issues way down the road.

This week I had another set of MRIs and my first post-medication checkup with my neurologist.  The great news is that I have no new lesions, which means the medication is doing its job.

From here on out, I'll just keep on getting the medication infusions, appts with my neurologist every six months, and MRIs every year.  If I notice new neurological symptoms, then that all could change, but for now, it's smooth sailing.

After a lot of worry and uncertainty, I feel hopeful and ok with the diagnosis.  Many of my spring/summer 2023 symptoms have resolved and the stuff I'm left with is totally manageable.  My health insurance has been great, allowing everything that has been ordered by my medical team.  Of course, I max out our family deductible immediately with each $170,000 infusion of the medication.  Eek!

I've encountered a lot of helpful advice, listening ears, and caring people along the way, including people here. 

So, thank you all 

[djs]

Thank you for this update and so happy for you!

[jaygee]

I was non creepily thinking about you and MS the other day and am happy to hear the positive update. I was hoping no news was good news. You’ve handled your diagnosis like the brave and confident women we all know you to be. Good job advocating for yourself and being a compliant patient (half the battle!). Modern medicine can be so great sometimes.

[kittyriot]

You are a gem Brux, I’m so very happy all is positive and that modern medicine is working the way it should. I know you’ve been good to yourself and that sets such an amazing example to those around you (including us).

[Pumpkinwest]

I’m so happy you’re doing well Bruxie! Such a relief that insurance is covering your meds, especially when they are literally life changing for you 🥰

[MelanieCarmichael]

I love this update and am so glad you are doing well.

I so appreciate you sharing your journey with all of us.

[ponyhairs]

I cannot believe it's been a year already. I'm so glad to hear such a positive update.

[piratecat]

Way to go brux! I'm so glad things have been going well for you and that you feel optimistic going forward. I'm sure that all the support you've encountered along the way is reflective of what you've put out into the world yourself.

[AmyG]

Brux this an amazing update.
hugs and prayers going your way
For Continued good news.
❤️

[pearbear]

That’s a great update!! ❤️

[angelashly]

I think of you often as we deal with my MIL who also has it and how far treatments have come since she was diagnosed.

I’m so glad that your treatments are working and you are doing well.

[miawallace]

That’s good news brux

If it’s not too nosy, what were some of the symptoms you experienced that led to getting tested for MS?

[Eagles]

Awesome update brux! You're a badass. And yay big pharma.

[brux]

Feb 16, 2024 12:31:30 GMT -6 miawallace said:

That’s good news brux

If it’s not too nosy, what were some of the symptoms you experienced that led to getting tested for MS?

It stared with my hand feeling asleep/tingly constantly.  Google told me it was carpal tunnel.  I got myself a brace for sleeping but it didn't help anything.

Then I started getting tingling in my other hand and my legs and torso when I was walking at a brisk pace. 

I mentioned these things to my regular doctor during an annual checkup about two months later, and really wanted her to confirm that it wasn't ALS, which is the disease that killed my mom.  She thankfully took me seriously enough to begin ordering tests.

But then, right after that appointment, I started getting these electric shock feelings in my hands and legs when I tilted my chin to look down.  It's called Lhermitte's Sign.  I sent a message to my dr about the new weird symptom and she called me back immediately and told me to get an MRI of my neck ASAP.  And on that scan, she saw some lesions.  So she ordered MRIs of my brain and other parts of my spine, and the spinal tap.  All to gather info to make the diagnosis.

So from that point, it was suspected MS until I could get an appt with a neurologist to confirm. 

[microworm]

So happy to hear this positive update!

[jorkzy]

Love this update brux! Modern medicine is amazing ❤️

[miawallace]

brux sorry about your mom. I’m glad your doctors hopped on diagnostic testing asap. Sometimes you have to bring a binder full of data in order to get taken seriously.
Anyway, you’ve made my day girl. Healthy and non relapsy vibes your way.

[jaidit]

Love this update!! 💪💪💪

[sweptaway]

I'm sure many steps of this journey so far were more stressful and upsetting than this excellent update lets on, especially in the beginning when you were worrying about what it could be.
I'm so glad to hear things are going well and that you have a positive outlook. Fingers crossed it stays smooth sailing for a good long while.

[byjove]

You are amazing <3

[adelbert]

I'm so happy to read this. You're the best and I just hope this journey stays positive and manageable for you!

[roselab]

I'm glad you are able to get the medicine that is helping without insurance issues, and I hope it continues to work well for you!

[cnf]

I'm so happy to hear that you're doing well! MS can definitely be a scary diagnosis and to hear your positivity is really amazing.

My grandfather lived with MS with minimal symptoms for decades. My dad's been having MS like symptoms for a while but his scans are continually clear. He's had four back surgeries and neck surgery and has been with his spinal doctor for like 20 some years now, so he's no stranger to these things, unfortunately.

Thank you for updating us.

[lifesaverz]

This is such a great update, thanks for sharing! I'm glad you're experiencing relief from the symptoms, & that you're feeling hopeful with the treatment plan!

[goldenbird]

I love this update!

[willow]

This is a great update! It seems like such a scary diagnosis to navigate and I’m so happy the medication is working for you!

[hawkward]

I was actually just thinking of you this morning because I had a patient with ALS. This is a great update.

[coldcoffee]

I’m so glad you were able to get swift, compassionate care and are feeling good!

[sterling]

So happy to hear this update. I hope you’re proud of how much you’ve done to support yourself through all of this too.

[blurnette989]

I'm so glad to hear such a great update!! You are amazing and I'm glad things are looking good.n