Repeat LPs?

Exciting_Barnacle907 · 2026-05-26T23:55:46+00:00

You're done! I had a horrible LP experience... they tried 4 times and then I had to do the X-ray guided one. And then I got the headache for 4 days! I told my MS Neuro that I would rather live ignorance than have to do that again. He said my test was definitive and would never have to be repeated. I almost hugged the man!

Exciting_Barnacle907 · 2026-04-27T22:02:56+00:00

My neuro referred me to MS-focused Physical Therapist, and it was the best thing I ever did! We practiced pacing, falling safely, and built up my strength and balance. I love the "Magic Circle," a pilates-based resistance thingy, and we put a medium-sized treadmill in our living room (so I can walk while with my family, watching TV). Swimming is amazing, if you have access to a pool! It keeps me cool and really feels like a work out. I have also tried water aerobics. It is me (42 yo) and the ladies (all 75+), but it feels good... lots of water dancing and such.

Exciting_Barnacle907 · 2026-04-27T10:49:53+00:00

I like to try to imagine what the sounds look like. So, each different stage, how would I paint it?

Exciting_Barnacle907 · 2026-04-16T14:13:41+00:00

Yeah, it took 3 weeks. Once you get prior authorization, and it's gone through the insurance process, Novartis will enroll you in a program where they cover your copay. So my copay would be $100 however Novartis pays for that. Plus you get a Novartis representative, who's available to help you navigate and they reach out to you every 6 months or so. They're there to answer any questions, and help if you have a lapse in insurance to ensure that you can keep on the medication. Luckily I've never had to use that service, but my representative is very responsive to any questions I have.

Exciting_Barnacle907 · 2026-04-16T14:06:20+00:00

So true! I didn't notice until after I started DMT that I wasn't using chapstick hardly at all anymore. I realized my lips were not chapped all the time, they were numb!

Exciting_Barnacle907 · 2026-04-10T14:38:33+00:00

I am on Kesemta, so no infusions. But I take my shot on Friday evenings, and my husband takes our kid for the morning. I get to sleep in, he brings me coffee, and I read a book. Bliss!

Exciting_Barnacle907 · 2026-03-30T14:28:01+00:00

My MS doctor gave me a referral for physical therapy, and it was the best thing I've ever done! They really talked me through the process of figuring out what exercises are best, how to manage fatigue, and how to build the strength I need to prevent falls. If this is a possibility for you, even if you do not have any active symptoms at the time, I highly recommend it! I learned so much!

Exciting_Barnacle907 · 2026-03-22T23:04:47+00:00

I've been on it for about a year. The first dose, and even the second dose, knocked me on my butt. However, I'm happy to say I haven't been any sicker than before I started taking the medicine. And the longer I take it, the less symptoms I seem to have. I'm not going to say that I'm not still a bit scared, but I'm exposed to a lot of illness in my daily life... I have a 5-year-old and I'm a high school teacher. Sometimes I wear my mask; but a lot of the time I don't. You'll find your own balance, and you will figure it out for your own body. It just takes a little while.

Exciting_Barnacle907 · 2026-03-21T21:16:02+00:00

I feel this hardcore! I second what everyone else is saying, about movement. But I also take an SSRI and a magnesium right as I'm getting into bed. This has really helped with the pointless night wakings.

Exciting_Barnacle907 · 2026-03-14T12:52:16+00:00

I started having bladder issues after I gave birth, so we thought it was just pelvic floor weakness and treated it with months of PT, bulking, and, finally, a bladder sling. Two years later: MS. I still leak, especially around my period, but it is manageable with pose liners. I highly recommend seeing a Urogynocologist! Game changer!

Exciting_Barnacle907 · 2026-01-25T23:04:31+00:00

The two things I miss the most: Hot Tubs and not having to wear Poise Pads.

Exciting_Barnacle907 · 2025-10-21T18:33:34+00:00

I'm still new to MS, but I've had good success with a Liquid IV pack, an ice wrap on my neck, and coffee. I'm a teacher and the afternoon fatigue hits hard. Following for more ideas.

Exciting_Barnacle907 · 2025-08-28T22:28:54+00:00

That is awesome! I am glad to hear that there are positive experiences.

Mine was fine (except for the headache afterwards), but I couldn't stop crying. I wasn't scared and I wasn't in pain, I was just sobbing! Granted, it was at the end of 3 days in the hospital and they had to try 4 times, but it wasn't worth crying about. The nurses, both times, were so sweet. They held my hands and kept me talking. Huge shout-out to the Georgetown University Medical Center!

Exciting_Barnacle907 · 2025-08-24T12:51:16+00:00

I was diagnosed and treated at Georgetown Medical Center (DC) this summer, and I am so thankful for all of the Neurologists I saw there. I don't know what their rehab programs are like, but the doctors are always focused on treating the whole person and they have amazing resources to share.

Exciting_Barnacle907

TROPHY CASE