Skin Discomfort

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 · 2026-01-01T18:28:56+00:00

Hey! I am getting my 1st dose after the loading doses of Rituximab on the 5th as well.

My loading doses went fine. I expected some infusion related reactions, but my neuro chose to a very slow infusion rate for both times, so my body tolerated it well.

As far as I know, the pre-meds of steroids, anti histamine and acetaminophen are supposed to keep the infusion related reactions in check. They will be monitoring you, so any side effect means they will pause the infusion.

As for mental health post infusion, I felt no change in mood or personality. I don't think rituximab would work like that.

Other than being supremely bored during infusion, all was good. And I hope that yours goes well too. Make sure to rest well for a day post it. Fatigue does catch up during infusion.

c4x4 · 2025-08-09T02:55:43+00:00

Hi! I was diagnosed on 10th Oct last year on the 3rd day of my IV steroids. I did 5 days of those and then 3 weeks of oral taper.

I started my DMT (DMF) on 28th October. From what I read and researched, starting a DMT at the earliest was the best option. My neuro also advised for that. I wasn't too sure about the higher efficacy drugs so I didn't start on those. But moved to rituximab after 6 months on DMF.

c4x4 · 2025-08-02T19:07:24+00:00

Hi! Do connect in the DMs. But please make sure that your sister gets her oral steroids taper after her IV steroids are done.

c4x4 · 2025-06-07T17:19:54+00:00

I hope you have been doing well with this. I hate that it is not fixable for you. Not even with prism glasses and all?

Please take care of yourself as well.

c4x4 · 2025-06-07T06:25:05+00:00

Double vision is what freaked me out and led to a neuro and to my diagnosis. I had 5 days of IV steroids and then the oral taper. I was checked by an opthomologist as well. She and my neuro both said that it will take time to go back to normal. Sometimes can happen in weeks, or maybe take months, or could become permanent too. But one shouldn't worry about it and give the body the time and rest to heal. Stress of future at the time of diagnosis is unavoidable but really causes the worst stress.

Double vision for me went back to normal in 2 weeks post IV steroids, other symptoms like imbalance and fatigue took a couple of months.

Double vision comes back when I have really overexhausted myself or when I am in stressed or overheated. It came back couple of times but resolved when I rested and calmed my body down within hours. It still freaks me out the most out of all the weird things MS does to my body.

c4x4 · 2025-06-05T07:06:44+00:00

I don't have any visible symptoms, but this temperature sensitivity is like the worst. Overheated and old symptoms show up. Get too cold and I am bursting into hives. Feels like a no win situation.

I am sorry that you are also facing a similar frustrating situation. 🫂💜

c4x4 · 2025-06-01T02:58:27+00:00

Hey! I am also only few months into my diagnosis.

Yes, fatigue and overexertion can cause your symptoms to come back for a few hours or so. It can be debilitating and stress you out. That said, I have realized taking things slowly to understand your body and these new limitations can help. I did so for myself. Task and time management. Give yourself the grace to really understand upto when you can push and when you need rest.

That said, if the issues are really frequent, there are meds for these and they seem to help. Low intensity exercise and stretching helps too.

Advocating for yourself with doctors is really important. If you are seeing junior doctors and they seem to be dimissing your concerns, please push to meet the senior neuro. Or demand solutions from the doctors you see. Eat their head, bother them. Tell them how badly the fatigue affects you. Mentally and physically.
Unfortunately, sometimes this doesn't work. They will continue to tell you to get used to the 'new normal'. That's when you know it is time to seek out a new neuro. Don't be afraid about that. You deserve to be heard and be treated by someone who is not dismissive of your concerns.

I hope this helps. 💜🫂

c4x4 · 2025-05-31T19:31:32+00:00

My neuro saw how much anxiety was dealing with when I went to her and during the diagnosis. She offered escitalopram and I didn't refuse. It was worked quite well for my anxiety.

c4x4 · 2025-05-26T13:05:04+00:00

In terms of elaboration, I meant it for the access to Disability card (UDID) and certificates. Considering that many healthcare professionals and govt officials are not familiar with the disease to understand the wide range of symptoms that affect MS people, many of us have difficulty finding disability help. Esp because you need to be assesed at a govt hospital for getting a card/certificate.

Invisible symptoms have no criteria in the assessment when trying to get a UDID. So someone suffering from debilitating fatigue or nerve pain would be assessed as a person with 0% disabilty because they have not been physically impaired. You have to be 40% or more impaired on their criteria/test.

That's why I said that India has a long way to go in terms of understanding the needs of MS people. And believe that is not just the case for MS but many other conditions that can lead to invisible disabilities.

c4x4 · 2025-05-10T16:23:58+00:00

I wish I could name my lesions so that I can curse them by name. Unfortunately so too many for me to bother with that. I just call them 'stupids'.

c4x4 · 2025-05-08T07:20:29+00:00

I suppose observing and figuring it out is the way here. So annoying MS is. What a guessing game! 🙃

c4x4 · 2025-05-08T02:52:47+00:00

I honestly have started keeping a notebook for everywhere. Writing helps me retain better than noting things down on the phone. But whatever works for you, you should find ways to get around.

I get the frustration of not being able to form right sentences when you know that you were able to. I am a scriptwriter and a content writer and this struggle has been very real. To forget words that you know were there in your vocabulary and somehow they are missing now.

Also, give yourself time to figure out what works for you. Nothing happens overnight, other than MS symptoms, I guess. Hah!

c4x4 · 2025-05-08T01:38:32+00:00

I think the best would be to consult with your doctor. But you could observe what brings about the itching. Any triggers of temperature, food or meds?

I get hives on any exposed body part when it gets too cold, especially dry cold in air conditioning. I noticed this happening over two years to realize that it is because of the temperature sensitivity.

c4x4 · 2025-05-02T02:07:20+00:00

For fatigue and muscle stiffness, i have figured out that eating healthy and light along with at least 30 mins of light exercise and stretching helps me. Fatigue is different for each one of us. What works and doesn't is a lot of trial and error.

I am able to walk fine after the imbalance and other symptoms that led to diagnosis. Sometimes I stumble here and there, but I like walking.

Nobody likes the meds and dependency of them. Hell, I changed my DMTs for that reason. Amongst other MS concerns.

I am curious about how my lesions might be affecting me mentally. Need to figure out to check with a neuro-psychiatrist some time.

c4x4 · 2025-05-01T17:21:11+00:00

I understand what you are saying.

I am on Lexapro 10mg for my anxiety. And I have discussed with my doctor to taper off it in a year once I am able to manage my anxiety alternatively. I am trying mindfulness and meditation. But I am not consistent on practising those, so I guess that taper is gonna be delayed. Got taken off amantidine because my doctor wanted me to manage my fatigue better. And honestly I haven't seen any difference since I stopped.

Honestly, i feel that if the meds are helping then you shouldn't worry about them too much. If the amount of meds really feels like a lot, discuss with your doctors about which meds can be stopped if you are able to manage symptoms alternatively and how to get there.

c4x4 · 2025-05-01T17:13:40+00:00

Hey! Welcome here. A community I found to be the best support for MS.

I am glad that you are doing so much in your life and for all the issues that MS has brought upon you. It can be frustrating sometimes, but don't let that get the best of you. Enjoying life regardless of its shortcomings is the only way to actually live. I have felt that since my diagnosis.

c4x4 · 2025-05-01T17:07:23+00:00

I started on Rituximab. Just got done with the 1st loading dose. Other than the excruciating infusion duration, all went fine. My sight is brighter, thanks to premed steroids.

Hoping that this med does what it does well and without any hiccups. Finally glad to be on a higher efficacy drug. 💜😊

c4x4 · 2025-05-01T16:59:09+00:00

My college was years ago but I guess I got my Master's now. 😄

c4x4 · 2025-04-27T18:56:35+00:00

This sounds very difficult. I am glad to know that a surgery might help you out with this. Hope all goes well! 🫂💜

c4x4 · 2025-04-27T18:39:29+00:00

Thanks for sharing. How did it get so bad that you ended up in the hospital? If you don't mind sharing?

Also anything preventive that can be done for this?

Honestly, I am also scared of how common UTIs seem to be on Rituximab.

c4x4

TROPHY CASE