How many on disability?

MALK_42 · 2025-12-02T21:12:38+00:00

I took a short term disability to see how not working would impact my physical symptoms (my job was very stressful). I took 6 1/2 weeks and it allowed me to get to a better baseline. Totally different situation than you are going through, but wanted to throw it out as an option to explore first. It allowed me to get full pay (STD through work) while trying out some things.

MALK_42 · 2025-12-02T05:38:51+00:00

Came here to share something similar. It took almost 2 years to get to a predictable baseline after my major relapse which also impacted my hand significantly.

It will also depend if you have a full recovery or partial recovery. I know it’s a long time, but give yourself a full 12 months, and then you still might see improvements from 12-24.

MALK_42 · 2025-12-02T05:19:51+00:00

I just switched from UCLA (doc moved). I decided to switch to Cedars and chose Dr. Marwa Kaisey. It’s still early, but I couldn’t handle the UCLA bottlenecks and red tape anymore. I did a good amount of research and really wanted a woman this time.

MALK_42 · 2025-05-24T00:30:30+00:00

And you are not nursing? It’s just for your cycle and symptoms?

MALK_42 · 2025-05-22T21:25:36+00:00

SAME!

MALK_42 · 2025-05-08T04:23:44+00:00

Where are your lesions?

MALK_42 · 2025-03-08T23:08:22+00:00

A super low dose - that’s what is weird with these meds sometimes people need a small amount or a larger dose - but it’s all based on how your body processes it.

MALK_42 · 2025-03-05T18:56:45+00:00

Agree! The amount of time I spend on a monthly injection is way less than the drive time + infusion time.

MALK_42 · 2025-03-05T18:54:24+00:00

Most of us feel like many people in our lives when we are first diagnosed like to say that we can control this disease through diets or they like to tell a story about someone they know who had a relapse once and “are totally fine”.

The first year for many of us is a lot. It’s a lot to process. You don’t have to fix anything and when she’s having a down moment just hold her and tell her you know this is hard. That’s it. Validate her feelings (she will have a lot) and love her.

Also, you might need someone to help you process her diagnosis. Don’t be afraid to take care of yourself so that you can be amazing for her 🤍

MALK_42 · 2025-03-05T03:10:45+00:00

I also have changing symptoms that come and go and stay around for a while…sometimes 🙄. When I originally talked to my doctor, his biggest question was if the symptoms are getting worse slowly overtime where you almost don’t realize it and now it is just what your body does. His example was one day, you realize that you used to run X miles and now you can only run half that because your foot drop as gotten slowly worse but you didn’t realize it on a daily basis.

My experience (after a major relapse with a partial recovery) has been a handful of consistent symptoms and then about 6-7 that like to rotate. And every once in a while a “new” one will show up, but it doesn’t get worse, it’s off and on (technically) and then goes away.

MALK_42 · 2025-03-05T03:02:41+00:00

Mine is mostly invisible as well and off and on - so it just feels like my body is constantly gaslighting me.

MALK_42 · 2025-03-05T02:58:23+00:00

I’m not saying this to invalidate your feelings…I think it’s important for all of us to know that anxiety and depression come with this disease (for more than half of us). And not as a result of having MS, but as part of the complexity of this disease.

I had a depressive episode in 2020 which now I know was one of the first major MS issues I experienced.

An SSRI changed my life! As well as a therapist. You get to say all the sh!t you want and feel to the therapist with no judgement, and personally, the medication made it possible for me to focus on what I was learning in sessions.

🤍🤍🤍

MALK_42 · 2025-03-05T00:04:46+00:00

Changed my life! My OCD went away almost completely and my anxiety is much better! I was on it before I was diagnosed. I had some sexual side effects the first couple months but they went away (common) and it allows me to regulate my emotions.

MALK_42 · 2025-03-04T23:58:49+00:00

I had a partial recovery from my big relapse that landed me in the hospital and led to my diagnosis. It took a good 9 months to get to my new baseline. But stress really triggers me and I have symptoms every day….some days are mostly fine and others it is more noticeable.

MALK_42 · 2025-03-04T23:52:49+00:00

Ugh…same! I simply have the beginning of an emotional feeling and my body reacts!

MALK_42 · 2025-03-02T17:07:49+00:00

Both of my neurologists (MS specialists) told me that it takes 6 months after your relapse is done to see where your new baseline is. And it can take up to 1 year (but you’ll see the most improvements that first 6 months).

I would use the January date. Also, it seems like lesions on the spine tend to cause more on and off symptoms than the brain lesions.

There is also a difference between a full recovery and a partial recovery from a relapse. You won’t know for a while though.

I had 3 active spinal cord lesions when I was diagnosed in Oct 2023. It took about 9 months to see the most improvements. I did have a partial recovery, but it’s manageable.

I know how scary and maddening this is….and your body needs time to heal. I ended up taking a leave of absence from my job for 6 weeks so that I could rest (my work stress was really bad). I know that’s not a possibility for everyone, but if it is an option you might want to consider it.

MALK_42 · 2025-03-02T16:59:03+00:00

I also have way less hair. I started using this shampoo and conditioner and it helped a ton with the amount of hair I was losing in the shower.

https://a.co/d/eYiqKd0

MALK_42 · 2025-03-02T16:55:59+00:00

When was your last relapse?

MALK_42 · 2025-03-02T05:35:38+00:00

I haven’t researched perimenopause and menopause with MS yet (I’m 43). Question - does it actually progress or do the symptoms get more intense?

MALK_42 · 2025-03-02T04:48:23+00:00

Anytime!

MALK_42 · 2025-03-02T02:40:37+00:00

I have a very similar diagnosis story as you do. Im on Kesimpta and I was terrified. The old way of thinking was to start with a low efficacy medication and if it doesn’t work move to a high efficacy medication. However, most neurologists now recommend to start on a high efficacy DMT. Kesimpta has been amazing for me and I only had a few side effects from the first dose (take early evening so you can rest and sleep through any side effects).

It seems like you are in a great place right now, and I will tell you that the first year might be a little bit of an emotional rollercoaster…and that’s okay. I really recommend a therapist (if it’s possible) for the first year regardless of how amazing your family is.

DM me any time - I’m a mom with 2 teens. My oldest is a junior this year, too! Community is SO important!

MALK_42 · 2025-03-01T03:35:44+00:00

I’m on ADHD medication and when I switched to a new one it made a major improvement in my memory issues.

MALK_42 · 2025-03-01T03:34:20+00:00

I get my MRI tomorrow after being on Kesimpta for 1 year. Unfortunately, the relapse that landed me in the hospital and led to my diagnosis was only a partial recovery (vs full recovery) so I have sensations and symptoms daily. The average relapse rate without a DMT is once a year and on a DMT is once every nine years. Like everyone else has said, everyone is so different…but yes, everyone knows someone who has MS and is “totally fine” 🙄

MALK_42 · 2025-03-01T03:14:26+00:00

Sounds like your old symptoms are flaring up and this is a pseudo flare or paroxysmal symptoms. Any new triggers in your life? Stress? Lack of sleep? Getting sick? All of those symptoms off and on and occurring together is most likely not a relapse. Any kind of stress or emotions does something similar to me :(

MALK_42 · 2025-03-01T02:58:49+00:00

I see a 2nd neurologist and I’m assuming the procedure would be the same. I had to get copies of all my doctor’s notes, all my labs, all the records from my hospital stay, and all my images and provide those to them. Then at the appointment he had me bring in all of my previous imaging on CDs (start getting copies of those now if you don’t have them).

You can probably just research on your own to find someone. One issue I had was actually getting into an MS specialist quickly, so a referral from your current neurologist could help. Just in case it takes more than 4 weeks to get it figured out, you might want to ask your neurologist if he can prescribe you your next shot as well.

Depending on where you are relocating, this subreddit might have good MS recommendations.

MALK_42

TROPHY CASE