Crazy situation and I don’t know if I am in the right place. I've possibly had MS since childhood, but have had no diagnosis yet and am nervous about tests. I have done so many tests and everything says I am healthy with minor findings such as rare arrhythmias on an EKG.
My symptoms started when I was a child
The story starts like this – when I was a child around 7 or 8 I had pains in my legs
. Parents always told me they were growing pains but my siblings and other kids didn’t have them. Whatever, right? I would also wake up in the middle of the nights crying with a migraine and not even realize I was awake and crying until my mother would walk in asking what was wrong. I would get shock sensations constantly on my neck, like burning shock that I could feel down my spine and in my head. I have always had coordination and balance problems and have always been in a brain fog. Back then Google wasn’t a thing and my mother didn’t listen and called me a hypochondriac.
My brain MRI came back normal
I’ve gone my whole life trying to be normal and refusing to admit anything was wrong during my periodic flare-ups every few months. Fast forward to now, December I became completely debilitated. Extreme lethargy, weakness, severe pain everywhere, still have shocks in my neck, some days unable to walk from pain and stiffness. Tremors, confusion, dizziness especially during a migraine, knees cave underneath while I’m walking, constantly losing balance, restless leg syndrome, ringing in ears, tingling in hands and feet, high lymphocyte constantly and I don’t know why, twitchy muscles all the time several times and hour, jerky movements, Short Term memory loss (several times an hour), cannot spell basic words at times and cannot read them (I have always been very punctual), slurring words, feels like there is a ball of mucus in the back of my throat I can’t get rid of, drooling on the sides of my mouth, biting my lips, cheeks, tongue while chewing everyday, and my upper spine was swollen a couple of weeks ago randomly - no injury, just appeared one day and felt like my spine was on fire and the skin on my spine was swollen to the point that my daughter could press her fingers in it like memory foam. There are other symptoms too but I won’t list them all. Brain MRI was NORMAL
. How? I don’t understand. He immediately dismissed multiple sclerosis and did not do further testing so I have not had a spinal MRI or lumbar puncture or anything else. All blood tests rule out rheumatological autoimmune and others.
This can't all just be in my head
So I guess I am just here for support. I don’t know if I have MS, but literally, the only tests I have not had to date are the lumbar puncture and MRI of the spine and other corresponding tests. But I am extremely discouraged because my brain MRI was normal. I have not been able to work since December because of this and it keeps getting worse. I don’t know if I’ll wake up in the mornings half the time and I have a family and career. We are struggling so much financially because I can’t work and I don’t even have a diagnosis to know what’s wrong with me. This can’t all just be in my head... why would my spine swell if it was in my head? And I just can’t understand how my brain MRI was normal
I feel so lost. I am just looking for words of encouragement if anyone can provide. I have an appointment with a new neurologist the first week of April and I am so nervous because I have done so many tests and found nothing to diagnose me so far. And I feel so horrible every day I just need help and can’t without a diagnosis. This is my last hope for answers and treatment so I can get better. I don’t want any disease or illness, but I do want answers. When all this first got bad in December my husband immediately thought of MS because one of his friends had it and it seemed similar. I have gone through so many hoops trying to rule everything else out since my brain MRI was normal and have successfully done so.
Terrified of "normal" results and no answers
I am just having a hard time believing that if I have MS it’s localized in a rare place like the spinal cord and I may or may not have had it since childhood. What makes me so different to have a rare disease in an even more rare way such as in the spinal cord? There are a lot of very rare cancers and diseases in my family, but I don’t know if that has weight. I am just skeptical because my last hope of finding out what’s wrong is increasingly becoming less likely, and I am terrified the doctor will come in with “normal” results and I will never know what’s wrong. Thanks for reading, sorry for the length.