30 something Female, I didn’t realize there were so many others out there stuck in limbo as well. This is certainly a frustrating situation to be in. I’ve had a few weird neurological things happen since spring of this year, but nothing that made me think something was wrong. What ultimately led me to get the brain MRI was double vision. I’d have the double vision for awhile, it just suddenly got worse. I had my brain MRI in Sept. that showed 3 lesions suggestive of demyelinating disease. Plus optic nerve enhancement. It didn’t appear that any of the lesions were new, contrast was used.
Saw a neurologist at big teaching hospital, who basically told me right away it's probably MS but we need to rule out a few other things and run more tests. He basically dismissed the first MRI and surprisingly my insurance agreed to another brain MRI as well as my spine. Second MRI showed the same lesions in the brain and descending cerebellar tonsils 5mm. The spine was clear. I also had a lumbar puncture that was negative. Here is where things went wrong though. I was told I’d follow up after all the tests were completed. I waited several weeks for the lumbar puncture results and never heard back. I can see a lot of the CSF stuff online in my patient portal but there is no IG index or band test studies! I mean I hope they did that stuff when I had the lumbar puncture but I don’t know.
Eventually I got a hold of the doctors office and the nurse was super rude to me. (This is where I add that I’m also an RN and that you shouldn’t tell people they are crazy!) So the nurse proceeds to tell me all the testing was negative and that I don’t have MS. Like any normal person, I had lots of questions and asked if the doctor was going to tell me what was going on. Should I be making another appt to come in to see him to discuss results? What about the descending cerebellar tonsils? The nurse said she’d call me back in a few days after discussing it with the doctor. She called me back as promised and proceeded to tell me that again its not MS and (word for word here!) that the symptoms I’m having all probably all in my head! Oh and I never need to worry about those brain lesions because they won’t get worse! At that point I just said forget it, which leaves me to where I’m at now…
Here is where I’m super confused, second MRI showed the descending cerebellar tonsils. That is suggestive of a Chiari Malformation. Apparently chiari can be a mimic for MS, but doesn’t cause lesions. I looked through all the medical journals I have access to at work and couldn’t find any connection between chiari causing lesions. Chiari also appears to be misunderstood by a lot of doctors. If the descending cerebellar tonsils are less than 5mm than its not true chiari etc. It is also quite common for the symptoms to show up in adulthood. Chiari also causes a lot of the same symptoms as MS, so I’m super confused. I’ve had constant tingling in my left foot / leg for the past week, is this potential MS or just chiari?
Thankfully I kept an appt with a more local neurologist and will follow up with that in January. All I really want out of that is an opinion on when to repeat an MRI and if this is a clinically isolated event, should I be treating this now? This neuro is the one I originally wanted to see and was recommended by a few doctors at work. The other super frustrating thing is that I was hoping to have the surgery to correct my double vision before the end of the year since I’ve met my deductible. Nope, the surgeon that corrects strabismus (eye muscle imbalance) instead gave me a dose of steroids and didn’t want to touch me for awhile due to the lesions.
Saw a neurologist at big teaching hospital, who basically told me right away it's probably MS but we need to rule out a few other things and run more tests. He basically dismissed the first MRI and surprisingly my insurance agreed to another brain MRI as well as my spine. Second MRI showed the same lesions in the brain and descending cerebellar tonsils 5mm. The spine was clear. I also had a lumbar puncture that was negative. Here is where things went wrong though. I was told I’d follow up after all the tests were completed. I waited several weeks for the lumbar puncture results and never heard back. I can see a lot of the CSF stuff online in my patient portal but there is no IG index or band test studies! I mean I hope they did that stuff when I had the lumbar puncture but I don’t know.
Eventually I got a hold of the doctors office and the nurse was super rude to me. (This is where I add that I’m also an RN and that you shouldn’t tell people they are crazy!) So the nurse proceeds to tell me all the testing was negative and that I don’t have MS. Like any normal person, I had lots of questions and asked if the doctor was going to tell me what was going on. Should I be making another appt to come in to see him to discuss results? What about the descending cerebellar tonsils? The nurse said she’d call me back in a few days after discussing it with the doctor. She called me back as promised and proceeded to tell me that again its not MS and (word for word here!) that the symptoms I’m having all probably all in my head! Oh and I never need to worry about those brain lesions because they won’t get worse! At that point I just said forget it, which leaves me to where I’m at now…
Here is where I’m super confused, second MRI showed the descending cerebellar tonsils. That is suggestive of a Chiari Malformation. Apparently chiari can be a mimic for MS, but doesn’t cause lesions. I looked through all the medical journals I have access to at work and couldn’t find any connection between chiari causing lesions. Chiari also appears to be misunderstood by a lot of doctors. If the descending cerebellar tonsils are less than 5mm than its not true chiari etc. It is also quite common for the symptoms to show up in adulthood. Chiari also causes a lot of the same symptoms as MS, so I’m super confused. I’ve had constant tingling in my left foot / leg for the past week, is this potential MS or just chiari?
Thankfully I kept an appt with a more local neurologist and will follow up with that in January. All I really want out of that is an opinion on when to repeat an MRI and if this is a clinically isolated event, should I be treating this now? This neuro is the one I originally wanted to see and was recommended by a few doctors at work. The other super frustrating thing is that I was hoping to have the surgery to correct my double vision before the end of the year since I’ve met my deductible. Nope, the surgeon that corrects strabismus (eye muscle imbalance) instead gave me a dose of steroids and didn’t want to touch me for awhile due to the lesions.
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