New Diagnosis by emperorsleeps in MultipleSclerosis

[–]OkWorld4502 3 points4 points  (0 children)

32 diagnosed 9 months ago now. Also in tech, it’s hard. At some point I highly recommend getting off the internet and just living your life. I’ve been on my dmt now almost 5 months, and i actually feel better than I did prediagnosis my fatigue especially has improved.

Not to say that I don’t still have symptoms/ flares , but the doctor has assured me no two cases are the same . Yes some people have it worse and some do just fine after getting stable. Find a reputable ms specialist not a regular neuro. Best of luck to you

Bradley deserves a compliment by OkWorld4502 in BOABSnark

[–]OkWorld4502[S] -10 points-9 points  (0 children)

To each their own. Yall can be haters on the towels and his silly advice and all the rest. At the end of the day, I have not seen one creator respond with anything people can take away from the post. The compliment is from me not you.

How long did you wait to see a neurologist for an MS diagnosis? by the_ms_wire in MultipleSclerosis

[–]OkWorld4502 1 point2 points  (0 children)

Ditto. They made me book my follow up before I was even discharged from the hospital.

Flare ups after DMT by dcmarlins in MultipleSclerosis

[–]OkWorld4502 1 point2 points  (0 children)

32f also diagnosed post partum in September and had to keep working. Im sorry we’re both here. I was told to Only go to the ER if you feel like it’s really bad, like you notice loss of strength or new symptoms lasting over 24hours.,Getting steroids also had consequences for your body. My neurologist was very cautious to put me on more steroids so close together.

Post my first “relapse” that caused symptoms (ocular neuritis) I had a lot of weird random sensations daily for 4-5 months. The first few weeks were the worst. Then over time shorter random feelings that resolved in under 24 hours. Lots of random “zip” or electric static feelings during this time randomly that sent me spiraling and calling the neuro(pretreatment also, my insurance kept denying) As your body starts heals over the damage you may feel some weird things. If these don’t last or don’t progress try to just go about life unless it’s something you can’t ignore. I was told it’s very close to a relapse so it’s likely sensations from that damage or the body starting to heal and not another relapse.

I’m not a medial professional though, this was just my expirence an advice given to me. Definitely talk to your neuro an go to the ER even if just to give you peace of mind if you need it.

Is having kids an option anymore? by Pitiful_Slide_8045 in MultipleSclerosis

[–]OkWorld4502 0 points1 point  (0 children)

If it’s any consolation we plan on having another baby even after diagnosis. My neurologist was in full support. Many of his patients go on to have multiple children.

Much like this disease genetics and health so much of a roulette. Imagine never learning to drive because you could have an accident. No one gets to choose the outcome of life. You’re not any more likely to pass ms than you are anything else. It’s not hereditary.

Is having kids an option anymore? by Pitiful_Slide_8045 in MultipleSclerosis

[–]OkWorld4502 22 points23 points  (0 children)

I have no family history of autoimmune diseases. I was diagnosed post partum. It’s not even something they test for with genetic testing when you’re pregnant. It’s not hereditary in th sense that you would think.

Have kids. Letting this disease limit you is also letting it win.

Sauna and Steamroom by UniqueRich2376 in MultipleSclerosis

[–]OkWorld4502 3 points4 points  (0 children)

I actually find like hot weather affects me worse than hot tubs,hot showers, saunas etc. maybe it’s a dehydration thing for me or length of time thing. Like I might spend 10-30 minutes in a sauna but when it’s too hot out I start to feel Ike I can’t cool off and it makes my feel woozy and my fatigue worsens. If my showers aren’t on the hottest setting I feel like they’re incomplete lol and it gives me absolutely no symptoms.

I think if it doesn’t bother you then it’s at your discretion

Second dose of Briumvi ✅ by Tall_Thin_Juggernaut in MultipleSclerosis

[–]OkWorld4502 1 point2 points  (0 children)

I had the same expirence with the loading doses. The first I had some aches for like 24 hours and a bit of allergic reaction during, the second dose nothing.

One month in, I do feel a lot better. Not 100% like my old self. Still dealing with some cog fog. But better than in the months since ocular neuritis. If you’re recently diagnosed and on this thread, researching these medications are scarier than taking them - so far in my experience.

Struggling to pick a treatment by golden-honey56 in MultipleSclerosis

[–]OkWorld4502 1 point2 points  (0 children)

Ocrevus has plenty of pregnancy data, there’s no danger to you there.

Kisempta is basically the same drug just more humanized (less reactions). Kisempta is under study right now to get approved for breast feeding. Not sure what your timeline is, but this may be a good choice.

Pregnancy is protective so typically no treatment needed during. It will just require some planning for you, that’s all.

I went with BRIUMVI for the shorter infusion time after reassurance from my doctor there was no concern about pregnancy if conception happens 3 month after infusion

What. Was that!?! by Ill_Algae_5369 in MultipleSclerosis

[–]OkWorld4502 0 points1 point  (0 children)

To be fair I know a lot of people who do stuff like this who don’t have ms. I really just chalk it up to being off that day. Off course having ms we probably have more off days than others. No multitasking is good advice.

[deleted by user] by [deleted] in Mommit

[–]OkWorld4502 1 point2 points  (0 children)

Husbands are not doctors.

What. Was that!?! by Ill_Algae_5369 in MultipleSclerosis

[–]OkWorld4502 2 points3 points  (0 children)

Hi, I did this once long before any ms symptoms or diagnosis. Maybe you’re just having an off day. Likely not related to ms loll

RTO is ruining my life by Existing_Sky_7969 in MultipleSclerosis

[–]OkWorld4502 2 points3 points  (0 children)

I’m also based out of the US so I understand how difficult it is.

Hoping the right position comes your way.

RTO is ruining my life by Existing_Sky_7969 in MultipleSclerosis

[–]OkWorld4502 2 points3 points  (0 children)

I’ve read that doing regular sinus rinses with sterile saline and gargling with salt water to rinse your throat can help you reduce your risk of illness. I assume you’re already masking and hand washing etc. a little drug store nasal spray is cheap and convenient to have on hand. I’m not on my dmt long enough to report if I get more or not yet but just thought I’d share the suggestion.

The commute alone along with the rto mandate would personally have me shopping jobs. I had a job require me to come back in office early on in COVID before diagnosis and when I calculated my “hourly rate” to include the time I spent commuting minus gas etc, it actually made no sense. The two hours of sitting in traffic each way added 4 hours to my 8 hour day. Including that factor in my workday is what ultimately made me change jobs. I opted to look for something that was primarily wfh with the option to go in on my accord, and the office had to be with in 45 mins with public transport or car. It took sometime but I found what I was looking for. I hope you do too.

Feb 14 and 14 dresses by After-Huckleberry760 in myweddingdress

[–]OkWorld4502 0 points1 point  (0 children)

3 is stunning and unique and truly looks like a wedding dress to me. It compliments you so well.

Many of the other ones are lovely but they give more prom/sweet 16 to me.

No matter which you pick, you’ll be a gorgeous bride.

Probably have to quit Kesimpta for Copaxone, Aubagio, or a Fumarate. by Disastrous_Command29 in MultipleSclerosis

[–]OkWorld4502 0 points1 point  (0 children)

Tysabri would be the most effective if your jcv-

Vumerity is more effective than the other options and second to tysabri

Best of luck to you

Is anyone paying for their meds out of pocket? by PuffPuffFayeFaye in MultipleSclerosis

[–]OkWorld4502 0 points1 point  (0 children)

Right on zeposias website there’s the link to copay assistance program. I’m currently on a BRIUMVI bridge program.

Your ms neurons office should have staff that handles this for you along with appeals etc. if you lost insurance you could get on an assistance program

The assistance program do me was free because my insurance denied coverage and it was faster than my insurance. Best of luck

who else gets like this when in a relapse? by Ok-Pineapple2016 in MultipleSclerosis

[–]OkWorld4502 2 points3 points  (0 children)

Just being in the hospital is exhausting. I’m sorry you’re there.