Last reply 1 month ago
Feeling lost

Hi everyone,

I hope you’re all well! I’m feeling a little lost at the moment.

I gave birth to my beautiful baby boy 9 weeks ago – unfortunately my epidural was placed in the wrong spot and wasn’t picked up until I went completely numb from the waist down and needed to be moved with a sliding sheet. Eventually my epidural was replaced and put in a better position, long story short i didn’t regain feeling in my right leg for three days and left the hospital with a foot drop and wasn’t able to walk for five weeks. I saw two neurologists who diagnosed a spilt nerve and advised I didn’t need an mri and that my foot would heal eventually.

After we left the hospital, I went back twice in relation to my leg and was again told I didn’t need an mri as it was definitely nerve damage from a spilt nerve.

We also received some upsetting news as the hospital called us and advised my sons cystic fibrosis screening was inconclusive and we then received a print out on suspected cystic fibrosis – this caused a lot of uncertainty and stress. Luckily we got the news that he is only a carrier.

After all of our drama and hospital trips things started to go well, I was able to walk and leave the house and was happy looking after baby and taking him to appointments etc. Then when I was feeding my son a few weeks ago at five am I covered my left eye and realised that I couldn’t see out of my right eye.

I contacted my gp the next day as I get migraines and got some migraine medication, the next day I still couldn’t see so I went to urgent care who referred me to the eye causality. I saw an amazing Neuro- ophthalmologist who said my symptoms sounded like migraine, but as I had inflammation he wanted to test for b12 and send me for an mri but as I had an mri six months before for other reasons he wasn’t too worried.

As I had done a lot of walking my leg played up and I needed to go back to urgent care. I saw a neurologist who decided to do an mri of my head and it came back with inflammation of both optic nerves and two tiny spots on my brain, he advised that he didn’t notice the spots but that the report said they could possibly mean ms and left it that.

I finally had a phone consultation with an inflammation neurologist last Tuesday who advised the MDT looked at my scan and it was inconclusive. He advised that I needed another mri of my brain and one of my spine, and as long as there were no changes on my mri and nothing on my spine that it wasn’t ms for now and we would wait and see but if there was inflammation on my spine from my leg then they would consider it ms.

I had my second mri today and I asked for no contrast as it makes me really sick but they advised that I needed to have it. Having the contrast has made me feel they found something on my spine and has caused me endless worry. The neurologist doesn’t want to see me for another 8 weeks which I guess is a good sign.

I’m feeling very frustrated atm as I wish an mri had been done in the first place for my foot and maybe If it is from lesions on my spine I wouldn’t of had to go through all of this right now.

My mum tells me not to worry as she has about ten lesions on her brain and has eye issues but doesn’t have ms (she suffers from chronic migraines) and that it would be so unlucky that my leg went numb right as I pushed out a baby especially because these kind of injuries happen a fair bit.

I know that I only have a 50/50 chance of having MS based on my brain MRI, and I know that there’s some amazing treatments out there, I just can’t help but think that I do have it and causing myself so much unnecessary stress and anxiety. Physically I feel great at the moment and apart from having possible optic neuritis have had no other symptoms so I guess I’m having a hard time coming to terms with everything and am worrying about the future a lot with a tiny baby.

I can’t help but blame myself for all of this and keep thinking if only I had breastfeed longer or if only I had waited for the mri by the ophthalmologist I wouldn’t be going through this right now. I guess I’m just looking for some positive stories and maybe some advice to not feel so lost 🙂

Sorry for the novel and thanks so much 🙂

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1 month ago

I found them same long waits with no really answers that are never good. I did eventually get my diagnosis of ms after my doctor said it wasn’t (I dr googled it) after 3 years. They also sent me for a pointless mri of the very base of my spine because of pins and needles (lesions don’t appear at the base of the spine for what I have been told).
Either way u have a lovely newborn that has a lot to be celebrated congratulations.
If you do or don’t get a diagnosis of ms or migraines at least you are on the road to accepting rather than the unknown. Limbo isn’t nice.

1 month ago

Good grief @cassie_farrugia, you’ve been through a lifetime of stuff in just a few weeks! But first, and more importantly, congratulations on becoming a mum. What a blessing! It may or not be a diagnosis, who knows. But everyone on here will relate to that period on waiting with uncertainty, limboland we call it. But you’ve just had a baby in the middle of a Corona crisis too, that’s massive! Which of the London hospitals are you registered with? The thing is, you must take this from one who understands and cares; stress is 100% natural, but it’s rally important that you don’t let it take over your life. Your priority is your little darling, and your health. Being a new mum, it’s normal to try and prove that you can do it and be a great mum, but you have this added pressure. And if it is MS, then stress has a real impact on us. So, take lots of deep breaths. Your are under investigation, so that’s a good thing. Sleep as much as you can. If someone offers help, accept it. You have more on your plate that 99% of new mums. Try to restore balance with eating healthy, but remembering to indulge yourself, too. If you can, keep calling to see if you can be put on a cancellation list. All of us on this site have been subject to outpatients/MS departments closing at the moment, which has probably slowed things down for you. If you can, take a list of possible dates and previous symptoms when you go for your appointment. Think about if you’ve experienced fatigue, pins and needles, bladder issues, anything like that. You will look back on this time one day and wonder how you ever got through it. But you will, and you have that little bundle to distract you! I wish you all the best, it would be great if you could update on how you’re going. Sending lots of remote support x

1 month ago

Congratulations on the birth of your son. You mustn’t blame yourself it’s nothing that you have done. Hopefully you will get some answers soon. ShiftMS is a great group for support and it’s ok to have a rant if it helps you. Take care and stay safe x

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