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Thread: Saw an emergency neurologist yesterday..very disappointed!!!! help ? :(

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    Unhappy Saw an emergency neurologist yesterday..very disappointed!!!! help ? :(

    I've posted on this forum before, but I saw a neurologist yesterday about my orthostatic symptoms (orthostatic tinnitus, imbalance, rapid heart rate the longer I'm upright, memory loss, cognitive trouble, orthostatic headache, orthostatic neck pain + fatigue, nausea, how my tinnitus and headaches 'chime' whenever I nod my head, etc).

    She blamed it on migraines! I kept trying to tell her my ENT's tried to blame it on migraines 2 years ago, putting me on several different migraine meds that didn't do anything for my symptoms! She's now prescribing me duloxetine which is an anti depressant (?). So I should be seeing my GP again in a week or two to talk about weaning off my old meds.

    I was annoyed because I was discharged from the neurology clinic and she said duloxetine will ''fix all your symptoms'' but I'm extremely skeptical. She dismissed the idea of a spinal leak or even chiari type 0. She said she couldn't see any ''structural abnormalities'' on my brain from a supine MRI without contrast in 2018. I've had these symptoms literally every single day almost 24/7 since 2009/2010. I also have a syrinx in my spine that has not been scanned for at least 8 years and she says the syrinx (cyst in spinal cord) can't be causing any blockage or problems even though it has not been scanned to see if it's grown.

    I'm very very disappointed because I have the feeling this is just going to be another round of sugar pills (pills that do nothing) and I'm going to have to wait another 6 months suffering every day to get a second opinion. Literally everyone I've spoken to who has the exact same symptoms as I do (orthostatic tinnitus and orthostatic headache + cognitive problems) ended up being diagnosed with a CSF leak and one with CCI. I've not been tested for either and this neurologist was adamant all my symptoms are migraines and refuses to test me for low CSF pressure, wonky CSF flow, or CCI.

    What do you think? Has anyone here went through something similar?

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  3. #2
    Distinguished Community Member agate's Avatar
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    Hi sarahmables,

    It sounds as if the emergency neurologist blew you off. You went to an ER and there was a neurologist there who saw you? That person probably didn't have access to much information about your medical history.

    Before going back to this neurologist or to this clinic, you might want to check around on the Internet for ratings and patient comments. Those can be very helpful.

    Could you find a different neurologist? Or do you have one already?

    You mentioned seeing your GP. The GP could provide a referral to a (probably) competent neurologist. Unfortunately there is sometimes a long wait for the competent neurologists but if you explain your situation to the GP, some effort might be made toward sparing you the wait.

    If the wait for an appointment seems too long, you can always request to be put on a list of people to be called if an appointment opens up. People cancel their appointments, and their slot becomes available. A doctor's office is often willing to put patients on that list and lets you know if there's an opening.

    I hope you can find a doctor who will address the concerns you have.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous

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