So I was diagnosed with MS in 12/2024 when I was 9 months postpartum. My symptoms started with double vision and dizziness, which was misdiagnosed as vertigo. A week later, I noticed facial weakness to the left side if my face and went to the ER where the MRI and LP showed many lesions and bands. I felt as if my world stopped and all I could think about was my baby and husband and how I just started the best chapter of my life. I felt as if my world was crashing down around me. After steroids in the hospital for 5 days, I was relatively back to normal. Fast forward to last month and I finished my first round of Ocrevus and I go back for my first full dose infusion in August. I recently in the last week or so started shedding A LOT of hair. I saw some posts about this and I’m praying that it will slow down. I’m going to call my doctor tomorrow. I’m not sure if I’m in denial, or if I have come to terms with what is going on and trust my neurologist when he says I “will be fine”. I read through a lot of posts before I decided to post something of my own. Happy to be here 🩵
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lakegeorgebigsur
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Hi lakegeorgebigsur. I'm glad you found us, but I'm sorry for the reason. I'm sorry about your hair. I'm sure you'll get more responses specific to that, but even though I haven't experienced that myself from meds, I have from age, I think. It's very upsetting! There are a lot of DMTs. Ocrevus is one of the most effective, but that doesn't mean that you'll have to be on it for the rest of your life.
Keep in mind that a lot of us whose posts you've been reading got diagnosed ages ago, when the meds weren't as good, and everyone is different, so you may never have to deal with some of those symptoms. You probably already know that the meds are way, way better than they used to be?
For me, my worst symptoms settled down after being on meds for several months, and I hope that will be the case for you, too. I know it feels like your world just ended, but while having MS really sucks, you can still have a good life. We are here for you, so please post often so that we can support you along the way.
I highly recommend Aaron Boster's YouTube videos. He runs an MS clinic in Columbus, OH, and his mission is to educate patients on self care and self advocacy. He gives me hope.
Welcome! I had hair fall after infusions, which would stop, but was messy for a few weeks.
It takes a while to come to terms with having MS. I lurked here for a few months before posting for the first time, back when there were only 500 people 🤣 I was newly diagnosed and pregnant at the time, and found the support here to be amazing 🥰
Thank you for this…did the shedding happen every infusion?? I’m hoping it only lasts a few weeks 🤞🏼😩 I’ve read so many stories of people saying they experienced the same thing. It’s so surprising the company hasn’t recognized it as a side effect.
I only lost the tufts of new growth when I had my first full infusion. Perhaps if I were able to stay on it long term, I would have just had thinner hair. I was restarted 3 times on O, and had shedding with 2 of those. The final attempt, I had already lost 40% of my hair from another drug adventure 😬
I think most immune altering drugs can affect hair. At least for myself. I had minor shedding from my last drug, but it grew back.
Congratulations on the baby! If you've dealt with childbirth and sleepless nights, you're more than able to deal with MS, but I'm sorry you had to join our club. I didn't have a diagnosis when my kids were growing up, but they knew since birth that Mum couldn't run and play like other mothers and that there were odd times when I'd have to suddenly sit and rest. Kids adapt, and your health will just be a part of their normal lives.
Thank you everyone for the kind words. I definitely feel like being able express my thoughts & feelings here will help. I saw a lot of posts on here about the hair shedding with Ocrevus and I’m hoping it will slow down like some have said. I put a call into my doc this morning to see hay his insight on it is. So hopefully he will have some reassuring words for me. Although everything I read online says it’s not a commonly recognized side effect 😩 so we’ll see.
Welcome to this forum, lakegeorgebigsur . You certainly have a lot on your plate, new mom, and this diagnosis of ‘ms’. I encourage you to visit mymsaa.org for more information regarding ‘ms’. There is a virtual webinar scheduled tomorrow called ‘Navigating your MS Journey’ that you might be interested in attending. I look forward to hearing more from you. Keep Smiling
Hi lakegeorgebigsur, and welcome. First, congrats to you on your beautiful new baby. Enjoy every minute! You found a great forum to get info, ask questions, vent and pick the brains of a wonderful group who have lots of real life experience with M.S.
I understand you feel overwhelmed right now, and your feelings are quite normal. It took me a year or two after being diagnosed to finally get some therapy to deal with all the feelings of anger, loss, denial, confusion and fear. Thirty years later, I feel like a "pro". Come here, visit sites like MSAA and National MS Society. We are here for you. You don't need to go through your journey alone. Take care. 😊
I've been in ocrevus for 4 years now, aside from me having a try on kesimpta in 2024. I have had some hair fall out myself, and I have a laugh telling my family I'm molting like a dog does in summer 😅
I was also in hospital before I started ocrevus, on steroid infusions too! I think the fact that I'd do my copaxone injections while I was in, and the nurses seeing me do them, got me on ocrevus faster! My MS is an aggressive from of RRMS, so I feel like a superhero battling this every day 🤣 I don't feel safe trying for a baby, but that's not because of ocrevus. I started my journey with simple partial seizures beginning 2013, and they turned generalised in 2020, where I found out my seizures are sleep sensitive 🫣 I don't trust my husband to wake up when a baby cries, so we've agreed that, when we feel properly ready for a child, we'll either adopt or be foster parents if we're able to be accepted 😁
welcome lakegeorgebigsur ! Congratulations on your new baby!One thing is for sure, we all remember the shock and fallout of being diagnosed with MS. So, we totally get what you are going through. I like to tell people new to all this that 40 years ago there weren’t any DMT’s and yet I am still doing really well. I have concerns about brain things in future, but Ocrevus will help you so much, even with that. Hair loss is upsetting, I hope it stops!
I hope so too! Thank you for the insight. I actually just found out my GP has MS and was diagnosed in ‘87 so to the naked eye, she’s symptom free now in her mid 60s. I know she has some minor things going on, but was really reassuring to know that she’s had it for almost 40 years and I never would have known had she not told me. So I’m very hopeful to keep moving on this path 🤞🏼
Hi and welcome! I’m so sorry about your diagnosis. It is definitely life changing. I was diagnosed 16 months postpartum, but never felt normal after giving birth to my daughter. Apparently common with MS after giving birth. My grandma had MS and had a lot of problems physically and mentally. When I was diagnosed I felt like my future was bleak and hopeless, but she passed away before there were even any MS medications on the market. Things are much different today!
Also, just a thought, have you considered that your hair shedding could be postpartum hair loss? I know I experienced a bit about 6-9 months after baby. Hope it goes away soon, it’s no fun!
Thank you for this! And I did consider postpartum hair loss, but I experienced it a bit at 6-9 months, but my daughter just turned a year and I don't know if it could still occur this far postpartum? But it definitely could be possible? I'll keep that in mind
Possibly! I know it’s easy to blame MS or MS treatments for everything (I know I do!) especially if there’s nothing else wrong with us. But sometimes other things can be the culprit🩷
It IS easy to blame MS for everything. I got up at 2 AM to take a trip to the bathroom, couldn't stay up, and landed face down on my nightstand! My GP told me to head to the ER to be checked out. I felt so stupid going there. My hurts were all muscle strain. But, low and behold, it wasn't MS that caused it but a bad UTI! Who knew?
Hi & welcome! It is good you found your way here. Very sorry for your reason to be here but glad you are. I am on Ocrevus also it does keep me on my feet & functioning hope & pray it does you also. How old is your baby now & is it a B/G? Prayers Mary
I have been on it for 5 yrs I had the same experience for my hair at first it went all over my body. Now, it is not as drastic. I can wait a long time to shave my legs
Right after having your baby! What horrible timing! You were diagnosed almost exactly ten years after me. I thought my life was...not over...but really scary going forward. My life did change, but not nearly as bad as I thought it would. I am more empathetic now, it taught me to slow down, and I never would have created my art without it. Yes, there are times that are harder than others, but just be happy you were diagnosed in this time in history when there are so many medicines available! Not so very long ago there was very little that could help. Try not to panic and enjoy your new little bundle.
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