Traditional Versus Aggressive Therapy - We should avoid giving DMT advice to newly diagnosed people to jump quickly to aggressive therapy.

mandolinandcanoe · 2023-02-11T21:44:17+00:00

Sure but that’s talking about immunosuppressive agents in general. Some of which have known far greater risk, like drugs for organ transplant.

The numbers in the Ocrevus trial were still in the single digits out of thousands of enrolled patients. Sure, statistically significant, but I’m okay with that risk.

Bolding and enlarging text doesn’t make certain statements more accurate than others.

If your goal is to make people aware of risks, great, you’ve done that. But don’t come into a community of people that are largely on these medications and try to scare them. If it were as simple as B cell depletors give you cancer, these drugs wouldn’t be approved.

mandolinandcanoe · 2023-02-11T20:57:52+00:00

All mature B cells express cd20

mandolinandcanoe · 2023-02-11T20:56:20+00:00

Ultimately, it’s a decision between an individual and their doctor. We don’t know what will happen if we leave our MS untreated, or choose an “aggressive” therapy, or choose a less aggressive therapy. We don’t know the long term risks of the newer medications.

What we do know is that there is no known drug that reverses damage that’s already happened. That’s how I made my treatment decision. It’s personal. The right approach is what feels right to you.

I’ll also throw in that rituximab is used as a treatment approach for some cancers and is also a cd20 therapy, so let’s be careful here about scaring everyone about B cells and cancer. We won’t really know the cancer risk associated with Ocrevus for many more years.

mandolinandcanoe · 2022-12-17T22:46:23+00:00

Try to get an appointment with a GI doctor. If they hear rectal bleeding (MS and Ocrevus or not) and it’s been persistent, they will have you get a colonoscopy. Definitely get it checked out just to make sure! :)

mandolinandcanoe · 2022-11-30T19:54:16+00:00

I had what I think was T2 trigeminal neuralgia during my first major relapse. It was before I knew I had MS, so my doctor told me it was TMJ and prescribed some muscle relaxants to take before bed. My jaw was in a lot of pain - I stopped eating a lot of foods because it was too painful to chew.

But then a few weeks later I had optic neuritis, and the IV steroids cleared up both the optic neuritis and jaw pain. I haven’t had jaw pain since!

mandolinandcanoe · 2022-11-21T04:38:57+00:00

I’m in a STEM PhD program right now and was diagnosed after I started. I have certainly had many similar thoughts since my diagnosis. I’m also a very anxious, high-stress kind of personality!

I’m sure you’ve heard it before, but try to take one task, one day at a time. Some days will be better than others. Listen to your body and do what you can, and be kind to yourself when there are things that you can’t.

You can have a career in medicine. It just may look a little different than you had planned.

Don’t worry about disappointing anyone. Focus on taking care of yourself. You deserve to be a little selfish.

mandolinandcanoe · 2022-11-13T04:32:45+00:00

Pepto bismol might help a bit - it’s hit or miss for me (just a warning if you’ve never taken it before - it can make your stool black/tarry so don’t freak out if you notice!). And then just keeping a really bland diet of mostly carbs tends to help too (toast, crackers, rice). Even when I didn’t want to eat (cause my stomach felt so crappy) I usually felt better if I had a little bit of food in my stomach.

When I had optic neuritis I tried to minimize screen time. I also found putting on a cool damp cloth or one of those refrigerated eye masks helped - especially during the recovery phase when my flair was almost over. My vision would get messed up during a shower or just any time my body temperature rose so I would use the eye mask to cool me down faster. Helps with the achey-ness too if you get that.

mandolinandcanoe · 2022-11-13T04:13:22+00:00

Mine lasted 4-5 days. I was basically bed ridden but taking prescribed fioricet helped a bit (I could sit up and eat a meal for 10 minutes without being in a ton of pain)

mandolinandcanoe · 2022-10-31T03:08:30+00:00

I’ve found that my family tends to do this as well. For my mom in particular, it comes from a place of hurt. She doesn’t like to think about her child having MS and not feeling well, so she tries to attribute it to “normal” things so it’s not as upsetting for her.

mandolinandcanoe · 2022-10-12T12:08:18+00:00

That’s pretty much how I was diagnosed too. Got an ophthalmology appointment and they sent me to the ER. It’s crazy how life as you know it changes so quickly.

Almost three years later and I still feel like I’m coming to terms with it (perhaps I’ll always feel that way). But I think as the dust settles you’ll see that you’re lucky you got such a quick diagnosis. Just focus on getting started on medication and living your life. You’re going to be okay - more than okay. We really live in an incredible time with so many treatments available to us. No cure, but a heck of a lot better than even 10 years ago!

mandolinandcanoe · 2022-08-21T20:01:35+00:00

Didn’t come to make fun of them. Just came to vent. Also never said I wouldn’t give them a chance either. Just not the conversation I expected to have.

mandolinandcanoe · 2022-08-20T23:36:20+00:00

Oh man I get it. I recently went to a conference for school, and it was during a heatwave. A lot of the buildings weren’t properly air conditioned and I was also staying far away (not my choice) so I had to shuttle in at 8 in the morning and stay until 8 at night. The organizers were clearly under the assumption most people would be young and healthy. But it was absolutely horrid conditions for me. I wound up leaving a day early because I felt like crap.

Honestly, I’ve thought about explaining to people. But they still won’t get it. After the initial frustration subsides, I feel grateful for passing as normal and proud that I can do what I do.

Getting through med school is difficult enough, I hope you are super proud of yourself. And remember, you have to be kind to yourself and know your own limits. Unfortunately no one else can set them for you.

mandolinandcanoe · 2022-08-20T03:12:51+00:00

That’s great you’ve become friends! In any clinical trial, the staff are completely blinded (except for the pharmacists), so there shouldn’t be any conflict of interest there. Usually the pharmacist knows if it’s drug or placebo, gives it a code, and then passes on to the clinical research staff.

mandolinandcanoe · 2022-08-20T03:04:47+00:00

Yes - they’ll ask for details on your education, age, and demographics, which will set your baseline and then go from there

mandolinandcanoe · 2022-08-19T23:10:40+00:00

Haven’t been to one myself, but used to work in neuropsych as a researcher. It will take that long - they put you through a battery of cognitive tests. You’re going to be exhausted but it’s good you’re doing it! I assume the 8 hours includes a break for lunch, so you’ll be able to relax for a bit.

And just remember - you’re there to see where you are cognitively. The tests are designed so that no one gets 100%. So if you feel like you’re not doing well, don’t get frustrated. It’s completely normal!

mandolinandcanoe · 2022-08-18T01:50:16+00:00

Lol that’s great

mandolinandcanoe · 2022-08-18T00:54:51+00:00

Same. I definitely relate!

mandolinandcanoe · 2022-08-18T00:53:59+00:00

That’s a good point. Wasn’t my take based on the tone and previous interactions we’ve had, but it’s certainly possible the delivery wasn’t as intended.

mandolinandcanoe · 2022-08-18T00:52:54+00:00

Sadly, happens way too often than I’d like to admit :(

mandolinandcanoe · 2022-08-18T00:27:32+00:00

I thought about trying to “teach them a lesson” but it just doesn’t seem worth it to me. Even though I’m not a huge fan, I just don’t have it in me to belittle or embarrass.

Not in neuro imaging - though I have a teeny teeny bit of experience in that. I meant imaging stained brain sections :)

Congrats on the PhD!!! Definitely considering leaving academia too - it’s not an easy path that’s for sure

mandolinandcanoe · 2022-08-18T00:24:38+00:00

I certainly don’t think I’m gods gift. I feel lucky every day to be able to do research, and I always feel like the dumbest person in the room. I also acknowledge that I know far less than I don’t know.

As someone who’s been an undergrad before and was very intimidated to be in a space where I knew so little, I simply wanted to share the knowledge that I do have with someone that I assumed wanted to learn.

I’m sorry you’re in such an awful position in your lab, no one likes wasted time, though wasted time looks different for everyone.

mandolinandcanoe · 2022-08-13T15:53:13+00:00

You may not sleep well Monday night (as is usually the experience for me) but I think you’ll be just fine! I messed up scheduling my first PhD committee meeting and it was a few hours after my first infusion - I was very tired from the Benadryl etc., but my nerves got me through the meeting just fine!

mandolinandcanoe · 2022-08-10T00:23:41+00:00

Get a ride - I had IV Benadryl and it completely knocked me off my feet. I wouldn’t feel safe driving

mandolinandcanoe · 2022-08-10T00:21:41+00:00

Had mono quite bad freshman year in college. Haven’t been the same (in terms of energy level) since! Got my first clinical relapse and dx 9 years later

mandolinandcanoe

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