Newly diagnosed
Hi all. I am a 32 year old female. I was diagnosed 2 weeks ago. I know the disease is different for everyone but I was wondering if anyone has a story similar to mine. I just recently had my first baby 11 weeks ago. I have never in my life thought I may have MS as I have had no symptoms. Two and a half weeks ago we went on our first family vacation. I noticed that night that my toes were tingly… I thought maybe it was from flying. With in two days the numbness had spread to the tops and bottoms of my feet, my ankles, calves, thighs, butt and pelvic area. We went to the ER and they did an mri and found 2 lesions, I had a lumbar puncture and it came back confirming MS. They did 3 days of steroids and sent me home. The steroids didn’t help my symptoms. Now two weeks later everything waist down is still tingly and or numb and I have a pain behind my left eye and sometimes my vision will go a little blurry if I am tired. I’ve been referred to the MS clinic here and I’m not sure how long they will take to contact me.
I guess I’m just looking to see if someone has had a similar disease course as me? From nothing to quite extreme in a couple days. Did your symptoms improve? I also heard post partum it is common to have a “flare up” due to body changes, so I’m wondering about people’s experiences with that. I see exercise is good for MS. Should I be trying to go for walks whilst my feet feel bad? I’m also finding it difficult to cope with the news after just bringing my son into this world. I guess just looking for someone to relate to… even though the thing I’ve heard the most is no two cases are the same
Hi,
, and welcome!
Like I always tell new members, I wish you didn't have need of this community, but I am glad you found us!
Being newly diagnosed can be such an overwhelming time and adding a brand new baby (and being a new mom to the mix) and that's just A LOT. Do you feel like you have a good support system as you adjust to this new diagnosis and having a little one to take care of? Also, don't hesitate to reach out to a therapist or another mental health professional because you definitely have a lot to process and manage. The juxtaposition of bringing a new life into this world and then receiving a life changing diagnosis mere weeks later is well, a lot to handle. I'm sorry. I'm becoming a bit of a broken record here 😉 I am not trying to scare you, but I want to reassure you that whatever you are feeling right now is totally okay and normal. If you're feeling angry or scared? Normal. Confused, overwhelmed, numb? Normal.
One of our contributors was diagnosed when her youngest son was three months old, after she had a pretty strong onset of optic neuritis. You can read a but more about her here -- https://multiplesclerosis.net/community/experts/emily-rhoades. You can read a bit about her diagnosis here -- https://multiplesclerosis.net/living-with-ms/motherhood-one-constant. Now, she found out a few years ago that her condition was actually not considered MS, but another condition, but I thought her journey might still be relatable for you.
I am glad you are on so top of things and went to the ER! I would suggest waiting a few days to call the MS Clinic, but if they haven't reached out to you in a relatively timely fashion, please feel free to call. When it comes to your health, sometimes the (polite) squeaky wheel gets the oil, if that makes sense. It seems every medical office is SO backed up, so being persistent and kind can pay off, so you don't have to wait too long to be seen.
When it comes to managing your symptoms while you wait for that first appointment, I would personally say listen to your body and trust your gut. While exercise is great, if you are concerned about falling while walking, maybe make sure to walk with a friend or your spouse or to be on the phone, so you can let the other person know if you fall or get tired and need some help. Many people do experience an improvement in symptoms once they find the right treatment regimen for them, so don't lose hope! And don't forget that regardless of your diagnosis, your body is still in its post partum stage and getting used to the changes it has endured over the last year, so be patient with yourself and your body as you adjust. We have another contributor that was diagnosed as a teen and went on to have four kids (one single birth and then TRIPLETS) -- https://multiplesclerosis.net/community/experts/calie-wyatt. You might find her stories interesting as she navigates being a young Mom with MS.
You can do this. I know this was probably the LAST thing you planned on dealing with as a new Mama to a little one, but Moms are strong. And you can do this.
The best thing I can recommend is to take care of yourself and your baby and make sure you have the best support system you can have as you prepare to deal with this new challenge. And lastly, at the risk of overwhelming you with information, I wanted to share one last piece about being newly diagnosed -- https://multiplesclerosis.net/living-with-ms/things-know-newly-diagnosed. You do not face this disease alone. Between those who love and care for you and communities like this one, you have people who can be by your side as you figure things out and move forward. And, I hope you are able to enjoy your baby and seeing the world through his/her eyes. Becoming a parent has a way of shifting our perspective on pretty much everything (in a good way).
Don't let MS keep you from being the parent you planned on being. You may need to adjust a bit and figure out what works for your body at this time, but you can do it!
Best, Erin, MultipleSclerosis.net Team Member.
