Weird Symptoms with No Answers

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Hi all, first thanks for looking and thanks in advance for any replies.

It all started at the beginning of November. I had a pretty bad headache. Took some naproxen, went to bed. Woke up the next day and my face felt weird. My scalp down to the tip of my lips felt numb. The feeling I could describe it being is if you injected my face with lidocaine and it’s beginning to wear off. It’s felt like that for three weeks now, and it’s constant. It’s also on both sides of my face.

I also sometimes feel my fingers trembling a bit. Noticeably on my left hand. Also the last three fingers on my right hand have felt numb for a few days now as well.

The numbness sometimes goes to my ears as well. I have no pain. Only had one headache since the initial one. 

I went to the ER twice. First, they took a blood test and a urine test and an EKG. Completely normal.

Second time I went was because I started feeling like my brain was cloudy or foggy. Went to the ER. Another blood test  and they drew double the vials this time. Took a chest x-ray and a CT scan and an EKG. All came back absolutely normal. They gave me anti-inflammatory drugs and Benadryl intravenously. When it entered my bloodstream, I could feel a weird tingly feeling in my cheeks - first time I’ve had any feeling in my face for a while. It didn’t last, and my face was left numb shortly after. I got sent home from the ER again with nothing unusual found.

Any ideas what this could be? Any insight would be greatly helpful. This numbness and cloudiness drag my day on and it’s irritating. I’m planning on seeing the Neurologist when there’s an appointment available in a few weeks.

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8 Replies

  • Posted

    Hey there,

    Im inpatient as we speak for your exact same symptoms. My symptoms started Friday. I had a Ct and blood test and everything came normal so they said probably just a headache. It continued on Monday, I went to a different ER where they gave me a MRI and found lesions on my brain. I'm here with suspected MS on steroids n I have a second spinal tap today. The first one was painful n I made them quit! I will have to be here until Monday for a total of 7 days of steroids! Trust yourself n seek help somewhere else! 

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    • Posted

      Your story sounds like mine. Misdiagnosed with ms. It was lyme. Plus three coinfections. Bartonella erlichi and babesia. I have lesions on my brain also. Was also misdiagnosed before that with numerous things. Then ms. If it is lyme. Steroids are the worst thing to do. I also had started ms med avonex. Not fun.  wasted so much time and money on mris and spinal taps and other test. Had them test me for lyme thru two labs. Both came back neg. had to pay1200  out of pocket for an accurate lab. Do homework on labs.  The ones insurance pay for are only 50% accurate.  If it is lyme find an llmd. 
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  • Posted

    Possible Guillan Barre Syndrome miller fisher variant. I wome up one morning with complete numbness of face and feeling terrible confused. Please get it checked can be mild or serious. If you develop weakness and tingling numbness in feet and hands.
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    • Posted

      Hey Angela,

      Thank you for your concern and reply. It's been three months since the onset of my symptoms and they haven't stopped since. I've been to 7 different doctors. My family physician, a neurosurgeon, a neurologist, an eye doctor, an ear-nose-throat specialist... Everything has been completely clear.  

        

      I've had 17 blood tests, urine analysis, chest x-ray, EKG, a CT-Scan and an MRI of my brain and spine. Everything came back completely clear. I'm scheduled for an MRN and an MRA (an MRI of the Nerves and Arteries/Blood Vessels) of my brain and spine next month. Searching for answers can be so frustrating at times. It feels as if perhaps all my doctors think I'm crazy for having symptoms when every test reveals I'm perfectly healthy.

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    • Posted

      I understand how you feel. When I was first ill I had all the tests and they made me feel like I was losing my mind. I finally found a neurologist who said he was sure it was Guillan Barre possible miller fisher variant. It is the only thing that mirrored my symptoms. I had 7 emgs to rule out als which was scared me so bad. I was told by two top neuromuscular neurologist that o may never really know what happened. It I was ok and had o move on and focus on how to get better. I was so upset at first but now realize I have no choice. Keep searching if you need to but at some point they will just send you to psychiatrist even though you know something is wrong and you aren't crazy but without labs or diagnostics to prove a illness they won't understand. Let me know what you find out or if you find a good doctor. Best wishes and blessings.

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