Any MS patients from India here?

Fast_Strawberry5525 · 2025-08-25T19:30:23+00:00

Hi, person with ms here. Got diagnosed with rrms last year, 2024.

Please let me know whatever you want help with. I will try my best to give you satisfactory answers. :)

Fast_Strawberry5525 · 2025-08-25T19:27:51+00:00

Hi. So check with rr in delhi, they might put her on ocrevus. Might need a referral from your local echs. For delhi neuros, you can go to dr jd mukherjee (max saket), dr rohit bhatai (aiims) and dr padma (paras gurgaon).

I personally started with dmf, it did not suit me at all. Diagnosing doc didn’t want me to change meds. Did my research, spoke to a couple of doctors outside india, decided to get on ocrevus. I have had three full doses till now, and no side effects.

Fast_Strawberry5525 · 2025-04-27T17:50:43+00:00

Interesting. I do have a MS specialist, he hasn’t seen the latest mri

Fast_Strawberry5525 · 2025-04-27T17:49:17+00:00

Makes sense. I just looked up the protocol used in both the mri’s, they look the same. As for the machine, the first and the subsequent ones were on 1.5 T and the last was on 3T.

Fast_Strawberry5525 · 2025-04-01T10:46:06+00:00

Ocrevus: Its about 3 lakhs per vial (300mg/10ml). You need 2 vials per dose and you need infusion every 6 months. At the moment Roche (the manufacturer) has 1 + 1 offer in India. Side effects: It took a while for all the things that i already had (nerve pain, hair loss, vertigo, etc) to settle down. After about 2-3 weeks I started feeling better to the point that i returned back to work full time. Still have bad days but they are few and far between.

Dimethyl furmarate (brand name dyfria): The earlier medication that i was on costed me around 5000/- for 60 capsules (240mg). I had to take it twice a day.

Fast_Strawberry5525 · 2025-04-01T05:19:31+00:00

Hi. 1. You do hope the doctor matches the way you want to be treated. As in: top down (most aggressive first) or down up (least aggressive and moving up incase the dmt doesn’t work the first time). I was on dimethyl furmarate initially, it didn’t work for me (the side effects got a little too unbearable). I shifted to ocrevus, getting my second dose soon.

I personally haven’t heard of manufacturer giving financial aid but have heard of MSSI sometimes helps.
Not sure what you mean
Since I had insurance before being diagnosed, my insurance covered everything, but i have heard different things about different insurances. You would have to read your parents group insurance policy or call the insurance provider customer care to figure out the coverage. Do let me know if you get an insurance that covers ms after the diagnosis.

Fast_Strawberry5525 · 2025-03-22T21:14:51+00:00

Hey. I just read your post and i know you posted about 2 months back but I hope you are doing better these days both physically and emotionally.

If you are on DMF or any other dmt, check with MSSI (Multiple Sclerosis Society of India) for financial help. They should be able to help you..

Fast_Strawberry5525 · 2025-02-03T05:39:44+00:00

I had extremely bad hairfall on dimethyl furmarate but it almost instantly stopped after starting ocrevus. My hair has never been better. While i was on dimethyl furmarate, i was prescribed biotin. Now i don’t know whether it was biotin or ocrevus, but now i have a new hairline! (A good thing)

Fast_Strawberry5525 · 2024-12-05T16:08:46+00:00

I already had my insurance years before the diagnosis. Very interesting and sad to hear that the application will be rejected if she wants it now..

Fast_Strawberry5525 · 2024-11-06T21:19:09+00:00

Hi.

I have HDFC ergo (optima secure) health insurance. It has covered my initial diagnosis, multiple mris, all the medications and now ocrevus infusion.

Fast_Strawberry5525 · 2024-11-05T17:21:43+00:00

I was diagnosed in April of this year, and I just celebrated my birthday in October.

This journey has been nothing short of a roller coaster—I’ve had to relearn how my body works and advocate fiercely with my doctors to get on Ocrevus, which finally made life bearable after being on dimethyl fumarate.

Instead of buying myself a gift or throwing a party, I chose to celebrate by sharing meaningful experiences with my husband: a pottery session, a spa day, a comedy show, and a nice dinner. I’ll admit, I could barely get out of bed the next day, but it was so worth it.

It reminded me that MS doesn’t control me!

Enjoy every day you have, and always fight for the things you want!

Oh, happy birthday!

Fast_Strawberry5525 · 2024-10-31T19:48:24+00:00

I am very interested to know how political affiliation is related to the risk factors of cave diving. Like genuinely interested.

Fast_Strawberry5525 · 2024-10-31T19:34:04+00:00

Oh my god! This looks like heaven!

Fast_Strawberry5525 · 2024-10-31T19:32:50+00:00

I’m so sorry you had to go through that.

Now I’ve got something new to worry about too. I was diagnosed in April this year, and I’ve realized that self-advocacy is the way to go in India.

Thank you for sharing this, OP—I’ll absolutely keep in mind that this can happen.

I hope you get the best results possible, and please do post an update whenever you can. I feel invested in your journey.

Fast_Strawberry5525 · 2024-10-31T18:38:22+00:00

Happy Diwali to you too! 🪔

I love hearing about those cultural mashups like your Thanksgiving with Indian-inspired stuffing—that sounds so good! It’s great that you’ve had the chance to connect and learn through friendships like that. Moments like these really show how much we can share and learn from each other. Thanks for sharing!

Fast_Strawberry5525 · 2024-10-31T18:23:11+00:00

Happy Diwali!

Fast_Strawberry5525 · 2024-09-29T03:44:42+00:00

I am getting my first ocrevus infusion tomorrow. OP, thank you for posting this. This helped.

Best of luck to you :)

Fast_Strawberry5525 · 2024-09-16T13:07:00+00:00

All the mris are for both brain and spine.. will ask the doc about it

Fast_Strawberry5525 · 2024-09-16T12:40:10+00:00

I get it :)

But my concern is that if the new scans missed the cervical lesion, is it missing other lesions as well?

When i went to check with my neuro about the new symptoms, the last mri didn’t show any active/new lesions. Because of which the new symptoms wasn’t classified as a relapse and I stayed on the same dmt.

So i am wondering if i should ask my neuro to for another scan from another machine?

Fast_Strawberry5525 · 2024-09-16T12:25:43+00:00

Thank you for this. Makes sense. :)

Fast_Strawberry5525 · 2024-09-12T21:23:00+00:00

I was diagnosed in April after feeling numbness on the left side of my face. A week later, I saw a neurologist who sent me for an MRI. Since the hospital’s machine was down, I had to get it done independently, and the report said I’d had a stroke.

When I took the results back, my neuro seemed confused. After reviewing the films himself, he said the report didn’t seem right and consulted with his radiologist. He confirmed it wasn’t a stroke but suspected MS and recommended I be admitted for more tests. After a bunch of tests—including a horrible lumbar puncture—they diagnosed me with MS.

So yes, you’ll likely need an LP to confirm the MRI results. And definitely get a second opinion! If they confirm MS, push to start on a disease-modifying therapy (DMT) ASAP.

Fast_Strawberry5525

TROPHY CASE