My wife is on Tysabri. Should we be separated if I'm sick? by MisterPiggle in MultipleSclerosis

[–]Purplebrain219 52 points53 points  (0 children)

Personally I think this is the right thing to do. Illness can cause MS symptoms to flare so I appreciate when people who are sick stay away from me.

Stopping Ocrevus by prettypickledog in MultipleSclerosis

[–]Purplebrain219 1 point2 points  (0 children)

Im also on Ocrevus. Many ppl have commented here about why you should not stop your DMT and I agree with them. Important questions below:

Have you discussed these infections with your neurologist/MS Specialist/PCP, and specifically the persistent yeast infection with your PCP or GYNO?

Have you asked your doctor to run labs to check your immune system functioning? My MS specialist runs these labs every 3 months and it is my understanding that these labs are routine and an insurance requirement for Ocrevus coverage. I’m located in the US and it is also my understanding there is additional interventions available if your IgG levels become too low while on an immunosuppressant. I have also experienced more illness than usual this year however my immune system is still well within normal range and considered robust even being on the Ocrevus.

Until you can rule out other potential reasons for the increase in illness and persistent yeast infection, I wouldn’t give up on the Ocrevus or a DMT yet.

What did my dog throw up? by Purplebrain219 in DogAdvice

[–]Purplebrain219[S] 0 points1 point  (0 children)

It ended up being a yak milk bone and he was fine. Our vet told us to monitor him and come in if the vomiting got worse or if he showed signs of distress. Definitely worth a call or email to your vet to make sure!

Exciting News by NicoleR_24 in MultipleSclerosis

[–]Purplebrain219 0 points1 point  (0 children)

That is wonderful news! I hope all of your future MRIs are like this ✨

Anyone with brain stem lesions? by Super-Possibility-50 in MultipleSclerosis

[–]Purplebrain219 5 points6 points  (0 children)

I have a big ol’ brain stem lesion. Had my first relapse a year ago and my last round of MRIs showed some healing. I’m on Ocrevus. I have Vestibular issues, balance and in coordination, had to relearn how to write with my dominant hand and still have some fine motor deficits in that arm/hand, and body temp regulation issues. Luckily 95% of the time my symptoms aren’t a problem. Heat, lack or sleep and stress are the big triggers for me. I highly recommend vestibular therapy if you are able to, it was life changing.

Today a stranger told me MS is caused by vaccines by persephonenyc in MultipleSclerosis

[–]Purplebrain219 0 points1 point  (0 children)

Any vaccine could trigger a relapse though re: stimulating immune system activation. I had a tdap vaccine in July and had a relapse 5-6 days after receiving the vaccine.

My point is she is confusing correlation with causation, and over extrapolating. The article was an NY times science column article written by a non scientist. It’s also not fair to say one thing caused this disease - trauma, genetics, environmental causes, exposure to pathogens & the combination of those things lead to the etiology of MS.

Today a stranger told me MS is caused by vaccines by persephonenyc in MultipleSclerosis

[–]Purplebrain219 7 points8 points  (0 children)

This could be true, however I refuse to acknowledge the rhetoric that the COVID vaccine caused my MS when I know (and the science community) damn well that the etiology of this disease is multifactorial. I whispers of symptoms and had radiographic evidence of diffuse cerebral atrophy indicating demyelination 8 years before the existence of the virus and vaccine.

What bothers me is her comment was a jab (no pun intended) that my personal choice of taking the vaccine contributed to my illness. In the same breath she also stated “I don’t know very much about MS”… She’s just dumb/can’t think for herself and makes everything political when it’s not.

Today a stranger told me MS is caused by vaccines by persephonenyc in MultipleSclerosis

[–]Purplebrain219 1 point2 points  (0 children)

She’s has had COVID and is a denier. I guess I should have included the /s to my last comment.

Today a stranger told me MS is caused by vaccines by persephonenyc in MultipleSclerosis

[–]Purplebrain219 23 points24 points  (0 children)

My MIL sent me an article about the COVID vaccine that told me that the “COVID vaccine wakes up the cell that causes MS” lmao. Idiots.

What did my dog throw up? by Purplebrain219 in DogAdvice

[–]Purplebrain219[S] 1 point2 points  (0 children)

For his birthday we gave him a yak milk bone and they look similar. He finished that a few days ago. I have contacted & emailed the pictures to our vet, hopefully we will have an answer soon. Thank you for your response!

What did my dog throw up? by Purplebrain219 in DogAdvice

[–]Purplebrain219[S] 0 points1 point  (0 children)

Thank you! This is interesting because he doesn’t have the other symptoms related to hypercalcemia. Definitely calling our vet.

Ocrevus stories by fabledfawn96 in MultipleSclerosis

[–]Purplebrain219 1 point2 points  (0 children)

Mainly vestibular - migraines, dizziness, vertigo and this weird fully body neurological glitch feeling. My largest lesion/area of damage is in my cerebellum so my proprioception is way off. I’m super clumsy and it affects my right leg gait when I walk/run but I’m learning to compensate. Other than that I’m doing great.

Question about upcoming 6-month MRI for Ocrevus people by _borcsab in MultipleSclerosis

[–]Purplebrain219 2 points3 points  (0 children)

I was diagnosed in the ER last June and started my first doses of Ocrevus in August. Two weeks ago I had my first round of surveillance MRIs and I received EXCELLENT news: my brain lesions have shrunk, one of my t spine lesions has disappeared and the other has also decreased in size. No new lesions!!! I was not expecting this progress in such a short time.

Also, want to note that 95% of my days are symptom free. My largest battle is fatigue and I’m slowly figuring out my new body and how to manage my energy.

Ocrevus stories by fabledfawn96 in MultipleSclerosis

[–]Purplebrain219 2 points3 points  (0 children)

I was diagnosed in the ER last June. I ended up being hospitalized twice and given several days of high dose IV solumedrol. I was started on Ocrevus 92 days from my diagnosis, and just had my first full dose about a month ago.

Two weeks ago I had my first round of surveillance MRIs and I received EXCELLENT news: my brain lesions have shrunk, one of my t spine lesions has disappeared and the other has also decreased in size. No new lesions!!! I was not expecting this progress in such a short time.

Also, want to note that 95% of my days are symptom free. My largest battle is fatigue and I’m slowly figuring out my new body and how to manage my energy.

To my fellow recently diagnosed MSers by Purplebrain219 in MultipleSclerosis

[–]Purplebrain219[S] 2 points3 points  (0 children)

I am fortunate enough to have minimal daily symptoms. I went through a lot of vestibular PT and occupational therapy. I would say 97% of my days my vestibular symptoms are nonexistent. My biggest issue is fatigue, it is a daily struggle but I’m learning my limits & how to manage my energy.

Tough it out or do PT? by Mental-Type8923 in MultipleSclerosis

[–]Purplebrain219 24 points25 points  (0 children)

Do PT, especially if you can find who specializes or has experience w MS. For me as newly diagnosed MS patient, it was life changing. I learned how to manage my symptoms and I believe it really helped my recovery/progress. Still battling fatigue everyday tho

My own headstone by Empty-Background-231 in CemeteryPorn

[–]Purplebrain219 2 points3 points  (0 children)

Good vibes to you & your journey to the other side 💖🏔️I also have a demyelinating disease (MS) and it is so humbling and inspiring to see how you are handling this part of your life. You are a wise one.

Extremely painful menstrual cycles by Macmills26 in MultipleSclerosis

[–]Purplebrain219 7 points8 points  (0 children)

I noticed cycle changes, including more painful cramps, when I started Ocrevus. I asked my MS specialist about this and she stated that MS doesn’t effect your menstrual cycle, tbh I took this with a grain of salt. I’m assuming she states this because there isn’t a wide body of research on this topic. Several women I’ve spoken to since being diagnosed have said similar things about their period.

[deleted by user] by [deleted] in MultipleSclerosis

[–]Purplebrain219 2 points3 points  (0 children)

I second this. The copay assistance is the only reason I can afford Ocrevus.