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brain stem stroke? what questions do I ask?


I have been reading your posts for days. I'm a 29 year old female who just finished my third half marathon, so I'm in relatively good health.   Seven years ago, I woke up and had lost feeling in my right side and had alternating pain with that loss of feeling. The pain started at the base of my neck and and shot down into my right arm and leg. I dragged my right leg and had little use of the right side.   I was admitted to the hospital for 2 days, and had several different tests (MRI of brain, cervical and thoracic, EEG, bone scan).  They were all normal.  They released me and I saw the neuro about a week later.  I had a spinal tap, and it came up equivocal for lyme and micobacterial tuberculosis.  It was a questionable diagnosis for both, but they treated me with IV Rocephin for the Lyme, and a year on 3 different drugs for the TB.  I got second opinions at University of Michigan Hospital (where my family is) and Mayo Clinic, where neither could find a major issue, and both disagreed with the TB.  I worked hard on the PT and eventually got much of my strength back.  I still have some residual chronic pain, for which I do acupuncture once a month, and am treated through that doctor who specializes in chronic pain and acupuncture.  He's a great great doctor and person.

Fast forward to about a month ago.  I woke up on March 23 with a crooked face and a stutter.  My doctor sent me to a neuro that day. He felt that it was nothing (kinda blew me off, in fact), and but agreed to do an EEG the next day.  I did that EEG, but over the course of that week, the stutter and facial weakness got worse, and I developed a severe pain/pressure in my right eye.  I called to ask the neuro what to do, and when I didn't receive a call back for 2 days, I went to the hospital. They admitted me for 3 days, and after getting a flippant response from the neurologist ("You should've waited for your appointment in 4 days"), they did several tests concerned that I first had a series of TIAs and then a stroke.  They released me when they couldn't find anything "life threatening".  While I was there, though, I developed severe vertigo (like I'm on a boat-rocking) and nausea from it. The neuro told me to see a psychiatrist, cause it was all in my head.  My mom yelled at him, and he's called to apologize twice.

I saw my GP the day after I was released and he is convinced I had a brain stem stroke and they missed it, and is concerned there's a lesion. I have a hard time looking to the right, I still get pins and needles on and off, the pain continues in my right eye, bad vertigo and nausea (vomit 2xs), difficulty reading (words jump around, then blurr).  In the last few days, I've started getting the hiccups a couple times a day, and when I do, they last for an extended period of time-like an hour or more. My doc got me into Georgetown Neurology 2 days later.  I went there, and the neurologist I saw was nice enough, but basically said a 29 year old who is healthy doesn't have a stroke.  He sent me home with a blood pressure med to try.  Meanwhile, my GP was infuriated that he ignored the stroke, and demanded he order another MRI at G'town where the machine is stronger.  I had that done on Friday, and when I saw my GP yesterday, they called and it hadn't been read yet (huh?!).  

The neurologist had originally said I didn't need to come back for 6 weeks, but my GP told him that was unacceptable and I'm seeing him on Thursday. What questions should I be asking?  I have a list from myself and my parents, but I know we're missing some, cause we're too close to this situation now.  My GP is adamant that it is a brain stem stroke, and says that they can be so tricky and missed on an MRI easily.  Anyone ever heard of this? I do have the risk factor of high cholesterol, but my bP is usually good.  It was all over the place in the hospital, though-high, low, average. My doctor feels it might be my birth control pills, so the neuro took me off them.  I am currently doing speech therapy, and PT/OT for the vertigo, cause right now I cannot function cause the vertigo and nausea is so bad.  

Thank you for anything in advance!!
1 Responses
Avatar universal
so sorry to hear about your situation.your GP sounds great though.hopefully the new mri will show more accurate results. they should have also done an MRA that looks at blood flow through the brain+ an MRI with constrast. hopefully that was done.  if they did find out that you had a brainstem stroke see if they can do something about it-remove clot etc. also, there are stemcell research studies around with stroke victims-maybe you could become a participant? good luck though and keep us informed with what the doctor says.  
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