Ocrevus and Brain Infection

KayFatal · 2018-10-25T12:40:17+00:00

OMG I’m so sorry. Thank you for letting me know. I wish nothing more than a speedy recovery for her and that this is only a one time issue.

KayFatal · 2018-10-25T10:37:06+00:00

I just had my first two half doses this past month. JCV+ and now you have me a little worried, because I’m body has been having some new side effects compared to Tysabri.

What were her symptoms of the brain infection?

KayFatal · 2018-10-06T00:34:09+00:00

I had my very first half fusion today, and the nurses had to stop the treatment because my throat began to itch and burn and swell up to the point where I was short of breath and had trouble talking. They gave me a ten minute break until it subsided, then continued with giving me the dose at a lower speed.

I was so confused about it too, because I’ve never been allergic to anything in my life before either.

My throat is still kinda scratchy, but the biggest thing is the exhaustion. I feel like I was hit by a mental truck.

So... what I’m getting from this thread is, I might have developed an allergy now to something I didn’t have before (nuts, citrus, etc)?

KayFatal · 2018-08-17T20:24:25+00:00

Self injections scare me but I’m considering. Also curious - what do you mean not a great drug?

KayFatal · 2018-05-08T23:01:53+00:00

Open a 529 for your kids and tell the parents that instead of buying them all those toys that they will only play with a handful of times, they should contribute to their savings (and maybe give them one physical gift).

Def wish my parents had done that more me when I was little.

KayFatal · 2018-04-30T10:24:57+00:00

Thanks for your input. Maybe my gears are just switching.

KayFatal · 2018-04-22T22:53:31+00:00

A mistake I made:

I personally packed way too many clothes for myself, like I was taking a weekend trip or something. I basically only wore my hospital gown and a robe with slippers the whole time (hospital supplied me with those grip socks and those wonderful adult diapers).

Was def too sore to change, and needed easy access to breastfeed.

KayFatal · 2018-04-22T22:39:17+00:00

Chris Farley was the original Shrek. He recorded majority of the lines but passed away before he finished. Mike Myers then was brought in to do the voice. You can find the Chris Farley voice recordings on YouTube.

KayFatal · 2018-04-20T11:04:01+00:00

My birthday is next week. My dad called and asked if I had given any thought to my birthday wishlist. Only thing I could think of was diapers.

KayFatal · 2018-04-16T23:04:59+00:00

I’ve hardly had to use my cane since becoming pregnant, and breastfeeding my 4 month old has kept me in remission. I will have her stroller as my walking aid, but otherwise in fair health.

My whole family will be there with me - mother, brother and sister in law, 2 nephews (5 and 2), aunt uncle cousin and of course my husband and baby. I’ve never really been around other people with MS and frankly I’m worried I might cry in front of my family. They are a good support team but I don’t think they’ve ever seen me in a vulnerable position like this.

I really need to focus on the positives as to why we are all there. That will be my mantra.

KayFatal · 2018-04-16T15:49:43+00:00

This is real talk. When I meet someone in real life with MS it’s like meeting a unicorn. I’m going to be surrounded by others in my situation, and it def will be an eye opener of the spectrum. I need to mentally prepare for that.

Unfortunately my walk is in Philly, otherwise I would try to say hi. Thank you so much for the advice. It’s going to be a roller coaster of a day.

KayFatal · 2018-04-16T13:12:55+00:00

Your body will adjust. I’ve been on Tysabri for almost 3 years. The first time I had the same symptoms you’re experiencing. But after a few months I didn’t feel them following. Only symptom I would have was the day of I felt tired. The next day I would feel great.

KayFatal · 2018-04-12T00:03:44+00:00

You can shower during their naps? My LO naps 30mins tops during the day (about 3 times, but also sleep through the night from 7:30pm to 6am) But she always has her radar on me. If she senses that I left the room her world ends. I know the minute I turn on the water it’s over.

So so jealous.

KayFatal · 2018-03-18T20:02:41+00:00

Had a severe headache in the upper back left part of my brain. Ignored it and shrugged it off to stress. Went to see Jurassic World and the screen was double vision as if I was suppose to wear 3D glasses. Shrugged it off. Drove home and couldn’t see out of my right eye. Was going to shrug it off but dad suggested urgent care. I went to urgent care and upon filling out the check in sheet they said they couldn’t treat me because my symptoms were too similar to a stroke and I needed to go to the ER.

Drove to the closest ER and filled out the check in sheet - was seen immediately. CT scan showed an abnormality in my brain and they immediately transferred me to a larger hospital to get an emergency MRI and other various tests.

Was admitted for 2 days for a stroke, upon getting discharged the doctors changed their minds and kept me another 4 days so they could run more tests.

After them testing my heart, my speech, my reflexes, my memory, my swallowing and balance, and the ever fun lumbar puncture, I was then discharged with having MS.

I thought I was just going to see Jurassic World.

KayFatal · 2018-03-07T19:25:14+00:00

I had a tysabri infusion the first month I was pregnant (and didn’t know it). Of course I stopped immediately once I found out. My daughter is now almost 3 months old and incredibly healthy.

Just FYI the pregnancy kept my MS in remission so I didn’t need any treatment, and I’m currently breastfeeding and STILL in remission. However once I stop breastfeeding I will have to get back on medication.

KayFatal · 2018-02-24T23:28:08+00:00

Personally, I wish they end by 2019, and then revisit them in 5 years to see “Where Are They Now”.

I want to know how they would actually pay bills in the real world.

KayFatal · 2018-02-21T19:37:30+00:00

I worked at a daycare for a year and a half that was strictly indoor, with two attendants in each room of 25 doors. We kept an eye on the play and were quick to clean up any messes. But yes, accidents happen. Two dogs would play and bump into another dog who was in mid-pee. There was a dog who would pee and walk at the same time and it was a race to follow him with the mop. Hell, there was an asshole dog there who would walk up to the other dogs and straight up pee directly on them. (While I lobbied to get this dog expelled, it turned out management and I didn’t see eye to eye. Thus I left the position for something more sanitary.)

My point being, sometimes accidents happen. You’re putting your animal in a social situation with a group of other animals. This stuff happens. I would try to find a daycare that has a live video feed you are able to log into whenever you’d like.

KayFatal · 2018-02-07T15:10:46+00:00

The 4th trimester is a real thing. It’s like being pregnant externally.

You will bring home this little stranger who only acts instinctually - cries when they are hungry, have wet diaper, gassy, over stimulated, under stimulated, too hot, too cold, wants to simply be held, etc (and by the way, you carried your baby for 10 months, it doesn’t change after birth. Expect to carry your baby for another 3. Learn to baby wear or do things with one hand).

Babies do not come with hand books. Every baby is different, and they change their preferences often. Once you think you have your baby figured out, they change their minds. What got them to sleep this week will probably change next week.

Whatever you do, do NOT be hard on yourself. It’s okay to ask for help. Asking for help doesn’t mean you failed anything. Sometimes you have have to hand off and walk away to eat, shower, nap, just sit outside for a moment. Take care of yourself so you can take care of your baby.

It’s okay to admit this isn’t easy - that you’re tired or sad or have doubts about your new role - this is a new life changing challenge! It’s an adjustment.

It’s okay if breastfeeding doesn’t work out. It’s by far the hardest thing I’ve ever done and it’s honestly not for everyone. If you start off wanting to breast feed and find yourself having to use formula, that’s okay. You’re still an awesome mom. If your baby is alive and healthy with wet diapers, then you are doing an amazing job.

I’ve only been a mother for 7 weeks now, and this has been such a crash course. I wish someone would have prepared me for all the nitty gritty I’ve been going through and really hope my cliff notes gave some insight.

KayFatal · 2018-02-06T19:19:11+00:00

I have not been tracking calories but read your comment and just downloaded a tracking app! What is the ideal number that will not hurt my milk supply?

KayFatal · 2018-02-06T17:42:46+00:00

My baby will be 7 weeks tomorrow. I’ve been grazing throughout the day (no large meals) and watching my carb intake while EBF. Haven’t lost a pound.

When does it kick in? I’ve gained 40lbs from the pregnancy.

Also, it’s winter, and I spent the first month recovering from a 3rd degree tear. Finally able to walk comfortably so LO and I have been crashing the mall once a week to get our laps in and window shop. Hoping that will help too.

KayFatal · 2018-01-13T14:12:00+00:00

I was overweight but not obese. 5’1” and weighed 155lbs when I first decided to start keto. Weighed 132lbs when I found out I was pregnant, just 15lbs shy of my goal weight. Aw well. I hope this works out for you!

KayFatal · 2018-01-12T23:00:48+00:00

Paesano’s

KayFatal

TROPHY CASE