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We answer all types of Neurology/Neurological questions about the brain, spinal cord, and peripheral nerves. Include your age, sex, current meds, and known diagnoses, upcoming/completed appointments, tests, or procedures. We are not physicians. We help explain medical terminology and give support.
Unilateral facial swelling and numbness
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Anon_24568 posted:
Back in June 2013, I had an episode where I woke up and the right side of my face was tingling. A few hours later, the constant tingling feeling turned into complete numbness in a section of the face. I was concerned about it so I left work and went to an urgent care. They did an evaluation and said it was Bell's palsy even though there was no visual changes or facial weakness. I was given vaclovir and a medrol dosepak and was told to follow up in a few days if the numbness had not resolved for a brain MRI. The numbness remained so I ended up going in for the MRI. The results indicated that I have scattered foci of t2 prolongation through the subcortial white matter, non specific in etiology. Possible etiologies would include demyelenation, infectious/inflammatory processes and vasculopathies, including migraines. First of all, I definitely don't have migraines so that was automatically ruled out. I was referred to a neurologist. So I went to the neurologist and he had the worst bedside manners that I had ever seen. He was on his cell phone making lunch dates and scheduling meetings right in front of me for literally 10 minutes. After he finally finished his other business I explained my symptoms to him. Besides the facial numbness, I also have been experiencing random tingling sensations in my hands and feet, general weakness feeling, and and an increase of tremors in my hands and occasionally legs. I also explained that I was diagnosed with a severe case of narcolepsy with mild cataplexy and mild sleep apnea back in 2008 and take provigil 400 mgs daily which thankfully allows me to be able to work as a medical assistant. Other than that, the only other meds I take are glucosamine and levocetirizine for allergies. I have no other known medical problems that I've been diagnosed with although I did have some slightly high liver blood work lately (ast/alt). Anyways, the neurologist did a physical exam on me and determined that my strength was a little weak and my reflexes were a little hyperreflexed and after looking at my brain MRI, he said he thought it could definitely be MS. So he did a full ms work up including MRI cervical and thoracic, full blood work (including ruling out stuff like Lyme disease, etc), visual evoked potential test, and a spinal tap (all normal). At the follow up visit, he looked at all the result and was puzzled. He said the next step would be an EMG/NCS of the right upper extremity and face. He tried to push me out the door after talking for me for less then 2 minutes. Being confused and just wanting to ask some questions I tried to catch him as he was running out of the door and he seemed very annoyed which came across as extremely rude to me. He finally just got up and told me to come out to the nurses station to schedule my emg and right in front of everyone said he thought maybe I had some anxiety. I was shocked by the comment and asked him why he would say that and he said I seem "freaking out about a little bit of numbness". I was dumbfounded and finally had to get a little bold back and remind him that it wasn't just the numbness but the fact that the tremors were worsening to the point where it makes my job very difficult at times and that I have weakness and that there are lesions seen on my brain MRI with no explanation of how they got there or if they would get worse... He just blew off my comeback and said, "we'll talk more when you come for the emg"... Needless to say, I was pretty pissed off and refused to schedule anything more with him and just gave up completely trying to ignore and live with my symptoms. Everyone kept telling me to find someone else to go to and get it taken care of. I decided against it because I didn't want to waste any more time or money just to not receive any answers whatsoever. So life went on and I've just tried to ignore it. However, just yesterday, the same right side of my face started to break out in a red rash only in the areas of my face that are numb. It didn't hurt, itch or anything and it just came out of the blue. The symptoms started to progress and my tongue on the right started tingling and burning. I just tried to ignore it but woke up this morning and the whole area only on the right face was swollen like crazy and my tongue still felt extremely weird. Still no itching, pain, and the numbness is obviously still there. There was nothing different that I ate or used on my skin so I didn't think it could be an allergic reaction. Especially some it is only on the right side. I went to an urgent care and the doctor said it isnt shingles and didn't look like like a typical allergic reaction. She was stumped. When I told her about my other episode she seemed worried that it was neurologic related. She still put me on prednisone which has helped with the swelling just a little so far. I still have it though and my tongue still feels extremely weird on the right side. She recommended follow up with neurology again or maybe even the institute of Chicago because of how complex the case has become. So frustrated right now and don't know where to start.. I work full time as a medical assistant and am not able to just go to appointments whenever I feel like it. Any thoughts??
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lifes responded:
There's a lot to your post, so I'm afraid I'll forget to address something. I apologize if I do.

No physicians monitor this forum. I have some medical background, but I cannot diagnose. However, maybe we can sort out some of this.

Of all physicians, neurologists and surgeons usually have "the worst bedside manners". It's probably because they see so many patients they forget what it's like to be a patient. They also seem to get irritated with explaining usual / expected body functions...silly, since most people would benefit from simple information. But the best thing patients can do is KNOW in advance to NOT expect ANY "bedside manners" with neurologists/surgeons.

Second, neuros in particular seem to forget that patients need to HEAR the list of "no it isn't" (whatever worst things it could be). Instead, neuros ASSUME patients understand, "If I haven't mentioned X, it's because it isn't X that ails you."

So without medical training or diagnostic ability, I would say you can assume some things are true based on what you know so far:
- It isn't a brain tumor--It would have shown on brain MRI.
- It isn't brain infection - spinal tap clear.
- The comment about "anxiety" likely indicates this neuro did not think it's anything serious. However, many neuros look down their noses about "anxiety"--AND if they can't find serious neuro problems, then they always think "anxious"... "psych". (I hate that but it's a fact they react like that.)
- That he wanted you to have a face / arm EMG says he wanted to rule out a peripheral or facial nerve cause. That's good bc it means he ruled out the brain or at least isn't convinced it is Central Nerves (CNS, brain).
So those are all good things.

See http://mri.cpson.com/pdf/A_practical_approach_to_white_matter_disease.pdf

However, things I'm questioning are:
- Bells Palsy often has facial muscle weakness...not just numbness. Bell's often quickly resolves on its own.
- The sudden onset of a focal rash.
- Your liver blood test changes.

At MINIMUM, a doc should re-evaluate your meds AND re-draw liver panel. AND do a re-check periodically. See http://www.provigil.com/

I would follow up with someone about the facial nerve and tongue numbness. If nothing else, start with your dentist for a neuro referral. Medrol (steroids) can help but may not correct the cause.

I'm really sorry I can't help more but I hope you at least feel you've been heard and taken seriously. I know personally how troubling "unexplained" symptoms can be and how frustrating it is to get no answers.

Please let us know what you learn,

Lifes


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