I am a 35 year old female and I live in Maine. For the past 7 years, I've been sticken with some debilitating symptoms. It all started back in 2009 about 4-6 weeks after I have birth to one of my sons. At first, the symptoms started out as very brief visual disturbances. I would lose my peripheral vision in one eye then sometimes in both. It would last a few minutes. Then it started progressing. Sometimes I got a headache with them, sometimes I didn't. My eyes hurt a significant amount to move, but I wasn't more light sensitive.
As things progressed over the years, I went from having the brief spells with a month or two in between to having what the doctor believed was 2 petite mal seizures. After that, my health declined. They originally thought it may be post-partum onset of thyroid disease (cleared.) Diabetes (cleared). Migraines (tried about 13 different meds and they either didn't change my symptoms or they made them significant worse to the point, I couldn't move. Literally.) I saw doctor after doctor and no one could tell me what was wrong. They did an MRI of my Brain (without contrast) and it came back mild White Matter Disease and a single specific lesion located deep in the white matter of the right frontal lobe. Doctors told me everything was "normal with no findings."
I had periods of remission so to speak, but now, they were getting shorter and I had multiple symptoms popping up with every time I started having symptoms again. I found a doctor who thought it may be Lyme Disease. Screener came back positive. Western Blots came back negative. She referred me to a Rheumatologist in January of this year. He believed I may have Lupus, Sjogren's Syndrome, Vasculitis, and Rheumatoid Arthritis. He did extensive blood and urine tests. He said they all came back fine and he could find anything that could be explained by labs. He ruled out Lyme Disease and all the other diagnoses listed. He agreed to try me on Lyrica 75mg in the morning and 75mg at night just in case it's Fibromyalgia.
Still having symptoms and now dealing with progressive issues of bladder control, bowel control, worsening vision concerns, EXTREME heat sensitivity, motor planning issues, a temor in my right hand, dropped foot on the left, gait issues, muscle weakness, severe muscle cramps, headaches, horrible pain with eye movement specifically in my left eye, significant memory deficits, auditory processing issues, stumbling with speech, loss of sensations in specific areas of my limbs, etc... I pretty much demanded that I see another neurologist.
Immediately upon meeting the doctor, she insisted I was having migraines without even getting a history from me. She repeatedly told me my MRI didn't show anything at all back in 2010. Not true. I had to argue it wasn't migraines. Reluctantly, she ordered Brain, Neck, and back MRI's with and without contrast. When the results came back, they wrote me a letter saying my neck and back MRI's only showed "very mild degenerative changes". Also not true. It should mild endplate changes, 4 bulging disks, 3 swollen lymph nodes, mild to moderate osteoarthritis, and several small hemangiomas in my spine.
They refused to give me the head MRI results. I went and got a copy of all MRI results. According to the final brain report, the white matter disease is still more mild, but that and the single lesion have progessed since 2010. Several different subcortical lesions were seen in my right and left frontal lobes, my parietal lobes, and in the cerebral hemispheres. All of which are new since the last MRI in 2010.
In his impressions, he says demyelinating disease including Multiple Sclerosis is the differential consideration. He also mentioned Vasculitis is a possibility. No evidence of active demylination.
I went for a follow-up with the Neurologist today and within not even a minute of entering the room (literally, I recorded the conversation)... she said it's migraines and she "doesn't care what the report said." After a heated dicussion, she ultimately told me to go find a new Neurologist. So I walked out feeling completely angry and frustrated!! She wouldn't listen to me at all.
Given the history, current symptom presentation, MRI results, and feeling like my life is being stolen from me, am I wrong to think this is Multiple Sclerosis??? Does anyone actually believe it coukd be migraines causing all of these symptoms? I have done hours and hours of research on all of this, but I can't find anything at all to suggest migraines can cause all of these symptoms, the relapsing-remitting cycles to more progressive symptoms, and the MRI reports which she wouldn't even consider????
I would like to go to a new neurologist and demand Evoked Potential Testing. I believe it's warranted in my case, but do you think it could really offer any new info? Or maybe just a new neurologist with an open mind could be helpful??