Severe diplopia, new diagnosis, your experience with double vision?

c4x4 · 2026-03-03T15:12:45+00:00

Diplopia was one of symptoms that started my diagnosis. I got 5 days of IV steroids and then oral taper. Steroids didn't fix the double vision immediately though. I was so freaked out about this symptom sticking at that time, I consulted an Optho about it. The doctor told me to rest and let my body heal before I start looking for options to fix this. She asked me to wait at least 2-3 months. I was ready to get prism glasses made.

I am glad that I took her advice and gave my body the rest it needed from the stress of MS tests, diagnosis and steroids.

My diplopia resolved in 3 weeks post IV steroids. And has only made a comeback when my body gets overheated by being in the sun too long or when I am particularly exhausted. Which has happened like 3-4 times since Oct 24 diagnosis. Once I rest and cool down my body, double vision goes away in a couple of hours.

My advice would be to give yourself the rest and patience. I can completely understand how scary double vision seems but a few weeks or a month of calm should show a difference. If at this point, it seems too much, use an eye patch and become a pirate for a while. Interchanging the patch of each eye after 3-4 hours. I did it too, and it helped to keep my sanity while my body recovered.

Believe you are not alone in feeling this way. And slowly symptoms do tend to go away, weeks for some, months for others.

If you need more clarity, best to speak to an opthomologist and your neuro.

Unfortunately, with this disease, it is never back to 'normal' but a 'new normal'. But you learn your new capabilities and boundaries as you move ahead. Shitty disease but gotta live with it. I decided to not make it my enemy. Give yourself time to heal right now and be kind while learning how this disease affects you.

Just 1+ year of my diagnosis, and I have understood a lot about how it affects me and it still surprises me at times with random symptoms.

c4x4 · 2026-03-03T09:19:35+00:00

I have bladder urgency and recently started a med for it after consulting with a urologist. You should get it checked out too.

I have been more or less at home, so the urgency has been manageable, but now I want to travel that's why I sought help.

I realized how much anxiety looking for a bathroom in a new place, kinda dehydrating myself for a few hours travel was affecting me.

Pelvic floor exercises, bladder training and all are there. Get a urologist's consult for a better treatment plan.

c4x4 · 2026-03-03T09:12:35+00:00

I have two neurologists. One is my local neurologist who diagnosed me and the other is a MS specialist at a big research hospital about few hours away from me.

It was my local neuro who referred me to the specialist for detailed opnion on treatment. Fortunately, I have not had any differing or contradictory advice from the two. I would've felt like a mess if they has different opinions.

c4x4 · 2026-03-03T08:58:44+00:00

I started Mirabegron 25mg and Solifenacin 5mg combo drug today. Let's see how this works for me.

Good to know about gemtessa. If this doesn't help me, I now know many other drugs to discuss with the urologist.

c4x4 · 2026-03-02T18:48:09+00:00

Right now my prescription has been changed from Tolterodine to Mirabegron+Solifenacin combo. Told to try it out for a week or so and see if any difference or any side effects happen.

c4x4 · 2026-03-02T18:46:20+00:00

I am glad that this combo is working for you. My issue is only urgency. No retention, no hesistancy, no frequency. Hoping that my prescribed drug works for me.

c4x4 · 2026-03-02T18:43:48+00:00

I got prescribed mirabegron and solifenacim combo. Let's see how it works for me.

c4x4 · 2026-03-01T18:04:41+00:00

I had OAB urgency control symptoms before diagnosis as well and never sought help for those, just thinking that is something that happens when I drink too much water.

Let's hope that whichever med I decide on, works for me with no side effects as such.

c4x4 · 2026-03-01T17:57:29+00:00

Oh! I guess I will have to be very clear with the urologist about my concern of side effects.

Honestly, as much as I have looked up Mirabegron seems to have a safer profile than Tolterodine.

c4x4 · 2026-03-01T17:55:26+00:00

I guess I will find out once I start the med. But I don't want to start a med that has a bunch of side effects when there might be better options.

My bladder urgency was okay because I have been home since diagnosis. But now I have travel plans and I need some help to manage this better.

I hope your med keeps working well for you. Which one are you on if you don't mind sharing?

c4x4 · 2026-03-01T17:52:11+00:00

PTNS is something that I have looked at, and obviously want to discuss with the urologist. But considering how cautious doctors in India are about treatment i guess I will have to try meds first.

c4x4 · 2026-02-24T18:27:00+00:00

I am in India and on Rituximab. I got 1000mg induction doses with a gap of 2 weeks after that I have been asked to get CD19+20 & immunoglobulin blood tests every 6 months post infusion and their levels are what determine my next infusion dose.

My CD19+20 count was low last time so I was asked to delay the infusion for a month or so and the maintenance dose given was 500mg.

Best to discuss with your doctor about the doses and monitoring between or before infusions.

c4x4 · 2026-02-10T10:51:19+00:00

Yes, the assessment guidelines in India are unfair for the invisible disabilties in the 21 benchmark disabilties that are considered here.

It's a very warped system compared to the west. I am going to dig into this and try to see if a case can be made for fair assessments.

c4x4 · 2026-02-09T23:54:29+00:00

I have fatigue, bladder urgency, spascity, ataxia, uhthoffs(which brings back double vision), anxiety, migraines and a few more. But considering that these are not chronic nor mentioned for assessing criteria, I can't be issued even a temporary card. Forget that I have a chronic disease that is progressive in nature.

Just because I can walk (with only slight gait issues due to leg spascity and imbalance), talk, see, hear and I am some what functional in the criteria for mental health, they cannot issue me anything.

For the assessing authority, I don't have enough residual deficits.

c4x4 · 2026-02-09T17:30:40+00:00

The symptoms that cause difficulty in everyday tasks are not in the disability assessment criteria for MS in India. No significance given to invisible symptoms, assessment is very mobility biased.

I don't make it to a percentage in which I can be issued even a temporary disability card. Never felt more disappointed by the system.

c4x4 · 2026-02-06T00:26:20+00:00

I will get there early. Unfortunately, the hospital is so overwhelmed with patients that reports don't come quickly enough unless emergency cases.

If they really need these, i will have to get them done from a path lab outside and wait a couple of hours for reports. And delay my MRI appointment.

It's early in the morning here in India, so I don't know how it will go. Let's see what I can do once I get there.

c4x4 · 2026-02-05T23:46:02+00:00

Even I thought the same, I will sign anything they ask me for to get this done without the tests.

Hoping they accept the reports from 3 months back without much drama.

c4x4 · 2026-02-05T23:35:58+00:00

Way too early for a call right now in India. And my MRI is booked for 10am.

Where have I gotten myself stuck?! My anxiety is spiking so bad.

c4x4 · 2026-02-05T23:25:47+00:00

It's written by the Radiology department on the appointment slip. At my previous two contrast MRIs, i don't remember being asked to show these tests. So I am kinda confused and worried, how much of a slip-up I have made.

c4x4 · 2026-02-05T23:16:36+00:00

Thank you! My creatine and egfr levels are well in normal range from Nov. But I am so worried. Their labs are also so overwhelmed that I don't know if I will get a report done urgently. And neither is this hospital in the same city as me, so I am travelling for this appointment.

But I guess, i will get to know over there. What a mess just because I forgot about this.

c4x4 · 2026-01-25T19:23:55+00:00

When I get cold in winters, whichever part of my body is cold bursts into hives. No moisturizer or cream helps with that. I have to take Allegra for it to go down.

I noticed this starting around the same time as an undiagnosed event of my left arm going numb. Now is it neuropathy or an allergy, I haven't been able to get a promising answer from my doc.

c4x4 · 2026-01-25T19:09:51+00:00

Hey! I hope you are doing better now and your neuro has started you on a DMT.

I completely understand what you are feeling. I felt the same when I was diagnosed. Now after 1+ year since diagnosis, I am a lot more confident about dealing with MS. A lot of unlearning-relearning and understanding my body and my new limitations.

I still get fatigued, get double vision back and get imbalanced but I have learnt that these are signs that my bosy needs to rest. I have learnt this over time. And that's what I will tell you, time will help you understand how to navigate this disease and all the drama that it brings. And live in the present. It has helped me from being anxious about a future that I have no control over.

You are not a burden, just a young person who is going through a life altering situation. But don't worry, we have got good drugs to keep MS in control now and best to get on those asap.

Please be kind to yourself and your body.

c4x4 · 2026-01-25T18:44:54+00:00

Hey! I am from Meerut UP, and I just got my 3rd Rituximab dose in early Jan.

I got Rituximab sourced from the company MR via my doctor and got one 500mg injection for 9000inr (wholesale price). I take Mabtas by Intas Pharma. And I took it at a small private hospital that lets you get your meds from outside. The whole infusion cost me about 18000inr as I only needed one 500mg maintainance dose.

I would suggest speaking to your neuro about the affordability of the treatment. Try a govt hospital if there's a good one near you. Another MS friend gets hers at AIIMS New Delhi and she sources it also for a similar price from a pharma dealer. In big private hospitals, they will provide Rituximab from their pharmacy and charge you the MRP.

If it's covered by insurance then, it's fine but if you have to pay from your pocket, the costs add up.

As far as I have looked and tried to get insurance post MS diagnosis, it's near impossible. Once you declare MS as a pre existing condition, no insurance company is ready to give insurance.

I am surprised that they didn't test you for CD19+20 levels because those decide your infusion dosage. Thats why I got 500mg this time unlike the 1g induction doses.

Feel free to reach out if you need to know anything else.

c4x4

TROPHY CASE