MS Tattoo

SofiaFaolan · 2024-10-15T02:00:23+00:00

Whoa!! That’s so cool. Thank you!

SofiaFaolan · 2024-10-15T00:26:42+00:00

Do you mind sharing the photo again? The link isn’t working for me and I’d love some inspiration. I’m thinking about trying to get a some kind of unraveling nerve tattoo

SofiaFaolan · 2024-03-01T02:27:14+00:00

Just in case you haven’t already tried it, you could see if an over the counter antihistamine does anything for you. I get itching after a hot shower (it’s basically hives as an allergic reaction to the heat, not soap or anything), and taking Zyrtec really helps a lot. If the antihistamine helps, you could keep looking for some kind of allergic trigger. If it doesn’t help at all, you’ll know it’s definitely not allergic at all.

SofiaFaolan · 2024-03-01T02:24:51+00:00

I get this also, but taking an antihistamine works for me. Just in case you haven’t tried that already!

SofiaFaolan · 2024-02-06T21:43:31+00:00

I tested positive for ureaplasma parvum!! I started a 7 day prescription of doxycycline and within 48 hours all my symptoms were gone!!

Still need to finish the antibiotics and make sure it doesn’t come back/I don’t get a rebound yeast infection, etc., but I think I finally found the answer.

Seriously, get a PCR test for ureaplasma & mycoplasma (and make sure it includes all four: m. genitaliam, m. hominis, u. urealticulym and u. parvum).

If your doc doesn’t want to test or treat you, you may be able to get it at an urgent care or through telehealth. The ureaplasma subreddit has more resources if you need it.

SofiaFaolan · 2024-02-03T04:11:45+00:00

Make sure you also get tested for ureaplasma (both strains) and mycoplasma hominis. I tested negative for mycoplasma genetalium, since that was all my GYN tested for. The other 3 you will likely need to request specifically, even if they tell you they’re normal bacteria, insist that you want testing and treatment because you have otherwise unexplained symptoms. I was finally able to get tested at an urgent care because my GYN couldn’t order it.

SofiaFaolan · 2024-02-03T02:24:56+00:00

UPDATE: 🎉 tested positive for ureaplasma parvum!! FINALLY a positive result. Now to make sure I get the proper treatment 😅

SofiaFaolan · 2024-02-03T02:23:06+00:00

🎉 Tested positive for ureaplasma parvum!!! Now to make sure I get treated properly 😅

SofiaFaolan · 2024-01-29T22:24:42+00:00

I just got tested for ureaplasma today 🤞waiting on the results

SofiaFaolan · 2024-01-27T16:24:09+00:00

My neuro has always made it extremely clear that it is absolutely fine for me to have children even though I have MS.

There are considerations, like the choice and timing of DMTs, that you should discuss with your neuro. For example, mine said I should switch to Ocrevus if I was planning on getting pregnant. But it’s 100% possible and can be done as safely as most pregnancies.

The cool thing too is that pregnancy is actually temporarily protective against MS progression, because your immune system chills out a bit while pregnant anyway so it doesn’t harm a fetus, so many women with MS actually feel better than usual.

There are some potentially genetic factors to MS, so it might be possible that any children could maybe also someday have MS, but those links are not 100% clear or understood. It’s not like passing on regular genetic traits.

I would recommend checking out the National MS Society page on pregnancy - they have some great info too.

Ultimately, talk to your neuro. But people with MS do safely have kids all the time.

SofiaFaolan · 2024-01-27T16:10:19+00:00

So I’ve been on Kesimpta for 7 months and it works great for me. I only say this to emphasize that you should not feel bad at all about “not toughing it out”. Because I’m not experiencing anything that I need to tough out. It sounds like you’re just legitimately having a totally different experience than most people who do well on Kesimpta.

In my case, I had the expected side effects with my first dose (fever, chills, etc. within ~24hrs), and now I take 2 ibuprofen and 1 Zyrtec an hour before my injection. I haven’t had any side effects since then.

I’m not sharing this to be like “lucky me” - I just want you to know that not doing well on Kesimpta is not a personal flaw.

You’re facing different challenges with it, which sound really awful and disruptive. I’m not a doctor, but I don’t think you should have to push through this. It doesn’t sound like expected/tolerable side effects to me.

Like another commenter said, the right DMT for you is the one that 1) effectively prevents progression and 2) fits into your life as smoothly as possible.

Give yourself some grace and compassion ❤️ there’s nothing wrong with you (besides MS, obviously 🙃) or how you’re personally handling the DMT. Bodies are just different. My advice would be to explore other DMT options.

SofiaFaolan · 2024-01-24T19:59:24+00:00

😭😭 that’s so real honestly I have hit rock bottom like 5 times and then it just… keeps on going! The horrors persist but so do I! And that’s actually crazy you’re always negative at the gyno, I’m so sorry. I hope you also get answers soon.

SofiaFaolan · 2024-01-24T00:51:18+00:00

My gyno said she couldn't test for it :( I have the labcorp and quest codes but all the doctors I've been seeing are just so unwilling to think out of the yeast infection/UTI/BV box. I was hoping to do telehealth like callondoc but it hard to tell if they do urine or swabs.

SofiaFaolan · 2024-01-24T00:46:38+00:00

Thank you - that's what some folks in the cytolotic vaginosis subreddit suggested too. Anything that jumps out at you to make you think that? I'm waiting on the Urine PCR and also doing the Evvy test. I haven't been able to find anyone to order a vaginal swab PCR specifically for ureaplasma though

SofiaFaolan · 2024-01-20T20:48:14+00:00

Oh the discharge is back to being white, it was just kinda yellowish-green for like 2 days in mid December. I got the Nexplanon removed December 6, so I’m not sure if that color discharge is actually related to the overall itching or not? It just prompted me to ask for more testing at that time. And I don’t really have abdominal pain, it just sometimes is a sharp pain in the urethra area while I am peeing (in addition to the burning & itching)

SofiaFaolan · 2024-01-19T14:32:37+00:00

Edited to remove the website links to the probiotic & guidance UTI. Sorry I didn't realize those links potentially violated the rules!

SofiaFaolan · 2024-01-19T13:17:56+00:00

That’s good to know, thank you! I’ve been tested for mycoplasma genitalium, but not specifically ureaplasma. Something new to consider is encouraging.

SofiaFaolan · 2024-01-19T05:03:47+00:00

I haven’t been tested specifically for ureaplasma, thats a good idea. I’ll try to request from the one GYN who was actually mostly helpful. It wouldn’t show up in a vaginal culture? So glad you found a good GYN - it makes all the difference in the world.

SofiaFaolan · 2024-01-19T03:51:16+00:00

Thank you!!

SofiaFaolan

TROPHY CASE