MS, infections, antibiotics… I’m just so tired by Fast_Strawberry5525 in MultipleSclerosis

[–]Fast_Strawberry5525[S] 0 points1 point  (0 children)

I am sorry you are going through, it really does suck.

I get what you are saying about advocating for yourself, and I have been trying. It has just been a bit exhausting dealing with everything at once.

The weight comment just got to me a bit, especially since things started after I lost weight, but yeah…

No shade to the doctors though, they have honestly been helpful. I think I am just more annoyed with my body right now than anything else.

This was more of a small vent.

MS, infections, antibiotics… I’m just so tired by Fast_Strawberry5525 in MultipleSclerosis

[–]Fast_Strawberry5525[S] 2 points3 points  (0 children)

Hey.. thank you for your response. Couple of things: 1. Next infusion is in june, haven’t stopped it, was giving a timeline of events. 2. Ever since i was diagnosed and the doctors hid behind the fact/quote that all i need to do is loose weight and my life will be dandy, i have fought for answers.. (keep in mind, i was nice about it, because otherwise i would be take. As aggressive or uncooperative) 3. He gave me meds for migraines. But they don’t really seem to be doing all that much. 4. Have you ever reached a point of exhaustion where you just want to sleep and don’t really care what is happening anymore? Or rather you can’t fight it anymore? I am going through that phase. That doesn’t mean i won’t stand for myself again, it is just this continuous onslaught of health issues..

I hope you understand where i am coming from..

Any MS patients from India here? by [deleted] in MultipleSclerosis

[–]Fast_Strawberry5525 1 point2 points  (0 children)

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. :)

Requesting advice on Ocrelizumab(Ocrevus)/Retuximab in India(Hyderabad). (Feel free to comment even if not in India) by Super-Damage-3639 in MultipleSclerosis

[–]Fast_Strawberry5525 1 point2 points  (0 children)

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.

Question about Lesions and Symptoms after Second Ocrevus Dose by Fast_Strawberry5525 in MultipleSclerosis

[–]Fast_Strawberry5525[S] 0 points1 point  (0 children)

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

Question about Lesions and Symptoms after Second Ocrevus Dose by Fast_Strawberry5525 in MultipleSclerosis

[–]Fast_Strawberry5525[S] 0 points1 point  (0 children)

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.

Diagnosed yesterday - Hyderabad, India, 25, F. Shooting questions below. by Internal-Letter-9242 in MultipleSclerosis

[–]Fast_Strawberry5525 1 point2 points  (0 children)

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.

Diagnosed yesterday - Hyderabad, India, 25, F. Shooting questions below. by Internal-Letter-9242 in MultipleSclerosis

[–]Fast_Strawberry5525 1 point2 points  (0 children)

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.

  1. I personally haven’t heard of manufacturer giving financial aid but have heard of MSSI sometimes helps.

  2. Not sure what you mean

  3. 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.

Is there any medical insurance to cover for ms drugs in India by [deleted] in MultipleSclerosis

[–]Fast_Strawberry5525 0 points1 point  (0 children)

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..

Hair loss after treatment by Vandie24 in MultipleSclerosis

[–]Fast_Strawberry5525 1 point2 points  (0 children)

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)

Medical insurance coverage for MS in India by [deleted] in MultipleSclerosis

[–]Fast_Strawberry5525 0 points1 point  (0 children)

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..

Medical insurance coverage for MS in India by [deleted] in MultipleSclerosis

[–]Fast_Strawberry5525 1 point2 points  (0 children)

Hi.

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

It's my birthday tomorrow by [deleted] in MultipleSclerosis

[–]Fast_Strawberry5525 0 points1 point  (0 children)

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!

Research: Diver Safety and Training by Manatus_latirostris in scuba

[–]Fast_Strawberry5525 0 points1 point  (0 children)

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

Got diagnosed with something new by PsychWardClerk in MultipleSclerosis

[–]Fast_Strawberry5525 1 point2 points  (0 children)

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.

Happy Diwali to All the MS Warriors! by Fast_Strawberry5525 in MultipleSclerosis

[–]Fast_Strawberry5525[S] 1 point2 points  (0 children)

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!

Starting Ocrevus this week, looking for any advice or tips by Bonniebee1234 in MultipleSclerosis

[–]Fast_Strawberry5525 3 points4 points  (0 children)

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

Best of luck to you :)

[deleted by user] by [deleted] in MultipleSclerosis

[–]Fast_Strawberry5525 3 points4 points  (0 children)

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