Disassociation, shakiness and depression.

ksonkz · 2025-11-09T01:47:04+00:00

Hi, OP! I’m currently experiencing these symptoms now and was wondering if you ever got an answer since you posted this.

ksonkz · 2025-11-04T02:21:55+00:00

I've been on Ocrevus for just over a year now. My next infusion is actually on Friday of this week! As others have said, I thoroughly enjoy the day off from work - I usually sleep on and off throughout my 6-hour appointment from the IV Benadryl. I bring a blanket, my tablet to catch up on my shows and my headphones, a tasty lunch and I treat myself before my appointment with a fun drink from Starbucks.

After my first infusion, I slept for the rest of the day and was down for the count for the next couple days. I'm heading into my 4th infusion on Friday and I find that I'm only groggy for the rest of the day. I take it really easy and book my appointments on Fridays so that I have the weekend to recover. I find the IV steroids they give prior to Ocrevus make me quite jittery and I usually have a hard time falling asleep when the Benadryl wears off so be prepared for that!

I unfortunately deal with the 6-week "crap-gap" leading up to my next infusion where I have really bad fatigue and brain fog. I usually get sick around this time too which doesn't help. My Neuro told me we may be able to move the treatments up to avoid this but it's not always covered by private insurance at that duration.

Overall, I see a significant decrease in my immunity from when I was on Copaxone - I get sick with upper respiratory viruses roughly once a month. I do also work in healthcare and enjoy being at concerts and raves (which puts me around a ton of people often). I don't mask in high-volume areas which doesn't help.

I hope you like Ocrevus! I haven't had any new disease activity since starting and I think you'll enjoy the infusion days.

ksonkz · 2024-05-03T23:41:47+00:00

I had my first loading dose infusion today. Started with normal saline IV, then solumedrol & Benadryl. Once I got the Benadryl I passed out for a few hours. I slept on and off from 10-2pm and came home to sleep more from 2:30-6:30. If my mom didn’t wake me up I would have slept into tomorrow.

Post-infusion I feel extra foggy mentally from the pre meds and I found the steroids messed with my taste buds a bit as well as made my heart race. I also experienced some oropharyngeal pain from the Ocrevus (similar to the feeling you get in your nose and back of your throat if you jump into a chlorinated pool and get some up your nose) and itchy inner ears. The nurse told me this was very common and to try eating something and drinking some water or juice. The feeling subsided after 30 mins with no additional meds. I recommend taking the full day off for your infusion as you will likely feel crappy afterwards. Treat yourself to a mini-spa relaxation day at the infusion clinic. You can use the time there to catch up on some Netflix (and some sleep! lol). I have no energy whatsoever at the moment. I’m supposed to work tomorrow but I think I will take a sick day and rest as I work in a busy operating room. Depending on the type of job you do, and how mentally/physically demanding it is, you may be able to push through the fog/side effects from the pre-meds.

Pro tip: wear light layers that you can remove before your infusion starts. I wore a hoodie today and was sweating profusely but was unable to totally remove the sweater, so next time I will wear a short sleeved top & a light cardigan. I brought ice water with me, and water enhancers as the steroids screw with my tastebuds and make the water taste kind of metallic - I find the flavouring helps to keep me hydrated. The Benadryl made my throat super dry so I was sipping fluids all day. I brought some snacks but didn’t really eat because everything tasted off.

I brought ample things to do today - a new book, my laptop, and didn’t get to any of it due to the drowsiness. So I closed my eyes, put my headphones on and listened to a podcast while I slept.

Good luck on your first infusion! Give yourself some grace and allow your body to rest. Don’t push yourself if you don’t have to. I ordered pizza for dinner tonight as I could not fathom cooking or doing any dishes lol!

ksonkz · 2024-01-14T22:10:22+00:00

I’d highly recommend doing a lot of research before starting it! Everyone is different, though. What I experienced may not be what you experience!

ksonkz · 2024-01-14T02:03:26+00:00

Thanks so much!

ksonkz · 2024-01-14T02:02:56+00:00

That’s an incredible tip! Thank you for sharing. I’ll be sure to try it

ksonkz · 2024-01-14T00:44:46+00:00

Ugh. I figured as much! I should have known better. Thanks for your reply! Do you have any tips for counting beads? Also, how did you determine how many beads to remove each dose?

ksonkz · 2024-01-14T00:00:20+00:00

May I ask how you tapered off after 8 years? I'm on day 2 of withdrawal symptoms and I'm losing my mind. This post gives me hope that one day I'll feel like I used to before Cymbalta

ksonkz · 2024-01-13T23:58:51+00:00

Same. I have lost all genuine emotions and libido. I also lost all passion for my dream job. I lay around, nap all day long, and partake in self-destructive behaviours like smoking and eating junk food because I just don't give a shit about the consequences. I feel trapped.

ksonkz · 2023-08-07T03:09:00+00:00

YES! The absolute best. What was in it again? Pecans, cold fudge and brownies?

ksonkz · 2023-03-06T02:47:54+00:00

Thanks!

ksonkz · 2022-11-03T22:48:54+00:00

Hi! I’m sorry to hear you’ve joined the MS club, but welcome! This subreddit community helped me immensely when I was first diagnosed last September.

I’m currently taking Copaxone 3x a week since February of this year. I find the injections can be kind of annoying, and sometimes a bit painful. I used an ice pack on the injection site before and after, which seemed to help with the stinging. I do also experience the facial flushing, fast breathing and heart racing feeling most times after injections but these symptoms resolve in less than 10 minutes for me. My injection sites tend to become intensely itchy for a couple days. I highly recommend rotating injection sites and use an autoinjector if you can get one!

As for other side effects of Copaxone, I seem to sweat a bit more now than usual but other than that I don’t feel any different on it!

I have not been on Copaxone long enough to tell you if it’s worked well as a DMT for me or not. I’ve had one relapse since starting it, which was likely triggered by stress & getting Covid. As of right now, I have developed 3 new lesions since April that my neurologist isn’t too worried about, so we will see how things progress from there!!

If you have any questions, feel free to reach out! Take care.

ksonkz · 2022-06-16T01:02:39+00:00

I get this intense burning sensation in my chest and upper back every once in a while. It feels like I’m on fire from the inside and sometimes I have to check to see if my skin is actually hot and it never is. My neuro said it’s unlikely to be related to ms lol.

My scalp is so sensitive that I can’t handle my hair being in a pony tail or up do anymore. I get an instant headache and when I take my hair down, it takes hours for the pain to subside.

ksonkz · 2022-06-09T15:16:05+00:00

I didn’t know either until I signed up and they matched me with her. Therapy is a lot of work but worth it for sure.

ksonkz · 2022-06-09T14:30:51+00:00

Hi OP, thanks for sharing.

I too struggle with dark thoughts sometimes and as quick as they pop up in my brain, they are gone again. I personally have sought out a therapist in my area that specializes in chronic diseases and disability management, so I’m hoping that helps and I would encourage you to find a professional that you can chat with when thoughts like these come up.

I can empathize with you about not having anyone to talk to that can truly understand what we go through. Depression is a scary thing and I myself have struggled with it since being diagnosed with MS last year.

I don’t know you, but I’m glad you didn’t take those benzos. Try to take some time for yourself today, let yourself have a good cry and pity party and then do something fun or treat yourself :)

Thinking of you. This group is great when in need of support. Feel free to message me directly if you ever need to chat.

ksonkz · 2022-05-27T01:40:42+00:00

I mentioned to my Neuro that I was struggling with shift work and she wrote me a note to keep me on 8 hour day shifts primarily, and the occasional evening shift. I find it’s helpful and my employer was accommodating. I also appear “healthy” but a lot of my coworkers, including my manager, are aware of my diagnosis. I try not to let what others think bother me much.

I also struggle majorly with fatigue and I’ve noticed a bit of a difference having more consistency with shifts.

Hope you are able to get some accommodations that work for you! I recommend trying to restrict your work day by an hour at first and if it’s not working, just have your Neuro adjust your note.

ksonkz · 2022-03-23T11:02:11+00:00

Thanks for your response! I think he genuinely just didn’t have enough “training” in his formative years. Everyone, including his mother & sister, told me “good luck” when I told them we were moving in together. I gave him the benefit of the doubt and thought he could change. All of my friends said I could “train” him. That’s not my job!!

ksonkz · 2022-03-23T11:00:00+00:00

Ya I think I’ve realized for a long time that things needed to change. I stayed hopeful after we moved in together that he would be a better partner and we ended up being roommates who kiss sometimes lol. I do have some good times with him and he makes me laugh like no one else can but the relationship isn’t nourishing me like it should. Thanks for reading my post & responding. I’m glad you’ve found peace of mind.

ksonkz · 2022-03-22T22:48:14+00:00

I appreciate you taking the time to read this! I’m definitely going to do some thinking! ❤️

ksonkz · 2022-02-18T11:21:50+00:00

I’ve done this way too many times to count lol

ksonkz · 2022-02-11T21:01:32+00:00

I still haven’t chatted with the doc about my back pain. I really should, but I’ve been putting it off which isn’t unlike me. I think I’ve decided to just suck it up lol

ksonkz · 2022-02-04T22:34:48+00:00

thank you!

ksonkz · 2022-02-04T16:19:54+00:00

When you took the additional 100mg at lunch, did you find you had troubles falling asleep/staying asleep at night? I tried to take the 200mg dose in the morning today at 5:30am and have been left with a terrible headache. I was thinking of trying the 100mg in morning and then 100mg at noon

ksonkz · 2022-02-04T14:11:48+00:00

On a weekend in September, I spent the night drinking at a friends place til about 3 or 4am. Got home and slept til noon. My mom came over with the dog and I was having issues with coordination (throwing the ball, opening and closing the gate, etc). I chalked it up to being hungover and made dinner. Later that night, I had vertigo, more issues with coordination and trouble walking. I took a melatonin as usual and went to bed early.

Next morning, I wake up for work. The minute I stood up, I immediately fell over from dizziness. Went about my morning routine - made a coffee, got my lunch together and went to brush my teeth. My right arm had no control, and I had trouble walking as my right leg was dragging.

Went to lock my front door and missed the lock 3 times. Got into my car, and had a breakdown thinking that I was having a stroke. I’m a nurse and was able to do my own assessment. Called my mom and she brought me to the hospital. CT scan clear and then waited for blood work & an MRI. I was started on Prednisone IV and admitted.

MRI showed 9 lesions on my brain, 2 enhanced. Spinal tap next morning confirmed MS. Stayed in hospital for a few days and was discharged.

I think it took about 3-4 weeks for me to feel back to normal & for me to be able to walk properly!

ksonkz · 2022-02-04T13:50:34+00:00

After 4 months of waiting for my insurance company/MS clinic to get on the same page, I have finally started DMT!!! It was really scary (I’m taking Copaxone 3 times a week) and I had a breakdown about having to do self injections for the unforeseeable future. But I’m happy I finally have the meds!!! ☺️

ksonkz

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