My Infertility and MS Story: Part 3

A neuro attack, a failed IVF round, and the decision to use donor eggs

My MS story began two weeks after a pregnancy loss following my first round of IVF. We’d had other losses, but this one seemed to have a bigger effect on my body. I’d been feeling incredibly wiped out, with a really achy lower back. Suddenly, the bottom half of my body went numb; worse on the left side. 

Within days, I could barely walk because I literally couldn’t feel the ground. Also, my feet felt very cold and wouldn’t warm up no matter what I did, which was so uncomfortable. My pelvic area was also numb. It was, honestly, the most terrifying thing I’ve ever experienced. 

It was a cold November evening in Sweden. Sleepy and ready to crawl into bed, I quickly went to the toilet to empty my bladder for the night and realized that I could not feel the seat under me. I reached back to touch the skin on my butt and there was zero sensation. So strange, I thought, maybe my butt is really cold? Having health anxiety, I’ve had to actively train myself to stay calm when odd things happen to my body because they usually pass. So I went to bed without even mentioning it to my husband, Alex. 

But the next morning, I was still numb. We thought, maybe it’s a pinched nerve? I went to see an osteopath. He gave me a massage and the advice to see a doctor if the feeling didn’t return, to rule out a neurological issue. That had been the furthest thing from my mind! 

In the next few hours, the back of my legs and groin area began to go numb and I was VERY worried. The next day, my feet lost feeling, too. So I got in with a neurologist immediately. 

Sitting on the seat of the tram felt like I was balancing on a rubber exercise ball. The neuro listened to me describe my symptoms and performed an exam. Then he told me that he thought multiple sclerosis was a possibility and I would need to get an MRI. He recommended that I go straight to the emergency room. 

My head was spinning. MS, really?! Wasn’t it extreme to jump to that? I anxiety-googled it as I sat on the steps, waiting for Alex to come and accompany me to the hospital. Walking up and down stairs created a strange sensation of springs being attached to my shoes. 

I was seen quickly at the ER, where the doctor tested the strength and feeling in my legs, feet, and toes. I could move and had normal strength, but I couldn’t feel the movements, at least not at full capacity. She explained that I may have an inflammatory lesion on my spine, indicating possible MS. And she turned out to be exactly right.

The MRI was next, of my brain and spine and with contrast. I’m extremely claustrophobic and hate needles, so it was very difficult to get through. With a brain scan, they have to put a little cage over your face. Luckily, the machine was not a narrow tube, but open on both ends, and the technician didn't strap me down. He was kind and understanding. I’ve had several MRIs now and I don’t even need an IV sedative anymore. It’s amazing how you can overcome your fears when you’re forced to face them. 

Alex sat at the foot of the machine for over an hour, resting his hand on my ankle; which I could not feel, by the way. He’s been beside me during every single horrible medical exam I’ve had to endure. 

Afterward, I was admitted to the hospital and the doctor ordered a bunch of bloodwork and a spinal tap to test my spinal fluid. If it sounds badass, oh, it is. Also, one of the most painful medical procedures there is. 

They wheelchaired me into a room where two smiling women stood with clipboards, asking if it was ok to sit and observe. “No, it’s not!” I snapped. Surprised by my reaction, they left the room. I know, hospital teaching is good, but I was just in no mood to have a front-row audience. I was instructed to lay in the fetal position and be as still as possible for thirty minutes as a sharp, crampy bolt of lightning shot down one side of my body.

The MRI had, indeed, revealed a thoracic spinal lesion (around 10-11 vertebrae) and the fluid showed a high number of oligoclonal bands. This combined with a clear brain scan seemed to confuse my doctor a little, as people usually don’t have bands if they don’t have MS, but then there’s often something on the brain scan. We redid the MRI and, still, nothing. 

To address the numbness, I was put on IV corticosteroids for the next three days to slow the immune response. That’s the most they can do for symptoms of an MS-like attack. No one was able to tell me when the feeling would return because I don’t think they knew. So when I was still numb ten days later, I panicked that there was permanent damage. But, thankfully, things did slowly start to improve. 

My neuro team ruled many things out (Eppsin-Barr, Lyme disease, etc.) and decided that early MS was the likely diagnosis, so I was prescribed a long-term DMT (disease-modifying therapy). It’s two shots I go to the hospital to get every 4-6 weeks. They’re given in my stomach and pretty painful. I went the past two times without Alex, which was a big step for me. 

Taking this drug has a small chance of a developing an even worse disease if you’re positive for the JCV virus (and I am) so I have to switch to a different medication soon, either another smaller monthly shot I can give myself or an IV every six months. The new medication will make me a little immunocompromised, so I’ve had to get every vaccine I can before starting this. 

There’s no cure for MS, but taking a DMT early has proven to significantly decrease the chance of having a relapse. My situation may have been a one time thing or the start of something, but hopefully the drugs will keep me from having a new attack. 

 I was discharged from the hospital and given crutches and a stool to use in the shower. My recovery was super slow over the next several months and constantly fluctuating. I would regain some sensation and then the next day, feel incredibly disheartened as I lost it again. I didn’t have much stamina, getting physically exhausted easily. The doctors said that since nerves can take a long time to repair, it could be 12-24 months before reaching my “new normal”. 

It’s been exactly one year now and I’m, mostly, symptomless. My feet and legs don’t exactly feel the same as they did, but I guess I’m used to it. When I’m barefoot, there is definitely a lack of full sensation, but I’m extremely grateful to be where I am now! 

In the beginning of my recovery, there was snow and ice all over the ground, so it was even harder to feel steady on my feet. Alex and I took short walks and I would hold onto him for support, sometimes letting go when I felt more confident. I couldn’t feel the ground for a long time, but I had to sort of relearn that it’s still there, regardless. Exercise felt really strange, especially running, and random buzzing and warming sensations radiated up and down my lower body, which was processing sensory information in a different way. Alex gave me foot/leg massages every night, which always made me feel better, for some reason.

Neurologists’ opinions seem to vary on what triggered this; the IVF drugs, the miscarriage, or simply bad luck. There have been studies that link MS and hormones, but the research is limited. Women with MS have an increased risk of relapse after giving birth. So if I do get pregnant, we have a plan to address that. 

But we’ve decided to avoid heavy amounts of follicle-stimulating drugs, just in case, which means I can’t use my own eggs for IVF. So we’re in the process of IVF with donor eggs, which is supposed to be more successful, anyway. It hasn’t worked yet, but we’re still fighting! 

Being newly-arrived expats in Sweden during all this made it all the more disorienting, but definitely less costly. I am mostly happy with the medical care I’ve received. Not having family and friends around was another thing, but I did have a couple friends drop off food while I was recovering, which was incredibly sweet, and we’ve begun to build a good support system here. And, of course, my amazing husband. I feel more resilient than ever. It’s not something you ever think about being grateful for, but every day I can walk normally and feel full sensation in my lower body is a win. 

Thanks for reading my story! I hope it is informative and helpful for people going through similar hardships. Have a question for me? I’m always happy to connect by email - jess@infertilityandms.com