Anybody misdiagnosed with MS?
Hi there, this may be a weird post but just want to know if anyone has had a similar experience even though I know it can be rare.
At age 25F I woke up paralyzed and numb in the left side of my body. They did a CT and the an MRI and found a 4cm lesion on my brain. Because of my family history they knew MS was a possibility. I got on a DMT and haven’t had any new lesions since. Just the one tumefactive lesion. But I never had a brain biopsy.
Recently, I had twins. My boy is perfect, meeting all his milestones and growing well. My girl, who is also perfect to me, is not. They both were born prematurely but my boy has done well with his time outside the womb. My girl hasn’t gotten the hang of eating and has low tone in her neck, jaw and trunk. Her brain MRI and ultrasound were all normal. I saw a geneticist and they suspect she has a genetic disease. We’re doing testing.
Now here’s the strange part. The geneticist asked me if I was sure I have MS. I said I think so, my oligalcolonl bands were pointing towards MS but again I never had a brain biopsy. Just MRIs and lumbar punctures. What he is suggesting based off my family history of MS, hypertrophic cardiomyopathy, my diabetes, my WPW and that I’ve had no new lesions, is that I have a mitochondrial disease. I have very little understanding of mitochondria diseases and the geneticist is going to talk with my neurologist.
I’m just trying to find anyone with a similar story that might have some insight. Whether that be for my daughter’s health or mine, any thoughts you might want to share are appreciated.