Dealing with symptoms from unknown cause

Posted by tiymay @tiymay, Feb 17, 2019

While pregnant with my second kid, I started having severe dizziness and nausea. Movement made me very light headed and I’d start feeling ill from it. One week on a trip, I ended up extremely dizzy, fainting and hitting my head. After giving birth, it started getting better. It’s mostly only happened some mornings getting out of bed. No one ever had an answer- they said it’s common in pregnancies and may just be vertigo or other similar issue that they don’t think is serious.

Now 3 months after giving birth, I was struck with major symptoms that almost caused me to crash my car. First the lights (it was night) started seeming so bright I couldn’t see or focus well. The light started making me very dizzy. I had nowhere to pull over so I kept driving. My tongue started going numb, then radiating through my mouth and around face. My hands started to go numb next, and I was finally able to pull over though very slowly.

It’s been 2 days and my tongue and mouth are almost back to normal. My fingers all have some numbness still. Lights don’t bother me as much, but I feel like I have extremely delayed reactions- everything is still just slow like when I had a hard time pulling my car over. My brain seems to be processing slowly- my eyes track things slowly, my body moves slowly, I’m thinking slower.

I’ve been to the ER after the fall and the driving incident. And for regular doctor appointments about it . It’s always dizziness or vertigo and no explanation for the numbness or anything else. They said the numbness is probably stress or anxiety induced but I wasn’t abnormally anxious or stressed either time. And since the symptoms have continued (though more mild) I don’t think the explanation makes sense. My blood tests, blood pressure and EKG were normal and they don’t seem to want to do any other tests. I’m not on any medications and they haven’t recommended any.

How have people handled these situations when doctors don’t listen and you’re given answers that don’t cover all your symptoms and don’t make sense?
I’m also scared to drive now and not sure how to deal with the fear of the symptoms becoming so bad again. How do you manage your symptoms there’s no known cause and so no treatment for?

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JK | @contentandwell | Apr 23, 2019

In reply to @ethanmcconkey "Hi @vmarie and welcome to Connect. You may have noticed I moved your post to this..." + (show)

@vmarie I am sorry to hear your daughter is going through such difficult symptoms. As @ethanmcconkey indicated, I went almost a year and a half without a diagnosis for symptoms which I discovered later should have made a diagnosis obvious. My problems were nothing like your daughter's, but I know the frustration of not knowing what is causing problems.

What I learned from this for myself, is that I will never, ever go a long time again without a diagnosis. I live in southern NH, about 55 miles north of Boston. If ever again I am not diagnosed in a reasonable amount of time I will head to Boston to a major medical center that is a teaching hospital. For me, the choice is Mass General Hospital. I go there now for virtually everything except for my PCP. If a diagnosis continues to elude your daughter's doctors, you may need to go elsewhere also.
JK

tiymay | @tiymay | May 9, 2019

I’ve now had additional monitoring of my heart, including wearing a monitor for a month. They ordered it due to worsening and more frequent chest pain/pressure. Though I felt symptoms while wearing it, they said it showed only mildly abnormal heart rates, nothing that should cause the symptoms I’ve been having. I was also sent to a neurologist, who is sending me for a brain MRI and more labs. My physical exam was mostly normal with just decreased sensation in the face and feet. She didn’t seem to think there was much to go off of, and thought a Migraine medication could help the dizziness symptoms (though no other symptoms). If no tests or MRI show anything, then they’ll be considering next steps. For now, I’m remaining disappointed with the amount of appointments and tests and lack of results. So many people act like I’m just making it up or being dramatic so it feels even more frustrating.