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Neurology (Expert Forum)
Facial Numbness, RA
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Facial Numbness, RA
by Judy, Jul 15, 2000 12:00AM
I am a 43 year old female who has had RA since 1993. There were a couple of years when the RA was not well controlled and it affected the joint where the head connects to the neck and the joint in the spine right at the top of the shoulders.
I'm including the full history, so I don't leave out something important.
In the fall of 1998 I herniated a disk left side L5-S1. It was bad. Surgery went well - relieved intense pain. During physical therapy, I was doing situps in pool. Following this, I got buttocks,right leg numbness and pain shooting down the the right leg. Another MRI revealed nothing. X-rays nothing. Just live with it. I still have this.
In May 1999, I started experiencing numbness in little finger of left hand, then little finger of right, then ring, etc. Cervical MRI showed herniation at c5-6 - not touching spinal column. x-rays normal. When in the shower, I would tilt my head back and I could feel numbness come beneath both shoulder blades.
In July 1999, I turned my head far at an intersection when driving. It hurt, but with RA sometimes things hurt. About 1 hour later my face started to go totally numb. Mostly left side.
I also had heart palpitations. They seemed to come when I layed down. Heart palpitations were recorded/verified on device by primary. The heart palpitations have gone away now. They lasted a couple months.
I saw a neurologist. He ordered a brain scan, eeg. These were normal. When I got up from the brain scan, I had significant double vision that did not receed for about 45 minutes. I had one other episode of double vision when I layed down. I got up right away; it only lasted about 5 minutes. Diagnosis: migraine. When I got the migraine diagnosis, I had been numb for 4 weeks. I asked isn't this a little long for a migraine to last without any headache. He said yes. But, there is nothing seriously wrong with you. I was dismissed.
I figured if it was migraine, it wouldn't hurt to move my head. I tilted my head to look up, and the numbness in my face came on stronger for a few days. I stopped moving my head at this point.
In addition to the numbess, I get the feeling that someone is pressing on my throat. This can sometimes occur with every step.
I walk very gently. If I realign my head, I can get this to lessen/go away.
My head felt loose. Acceleration and deceleration in the car would cause my neck to crack and numbness come on. If I tripped over something numbness would come on strong and the pressure in the throat, too. It would last for a few days.
Rheumatologist suggested a cervical collar. I now wear that when I drive. When I put on the cervical collar, the facial numbness tends to receed, but a burning sensation tends to come at the base of my neck - near shoulders. This happens repeatably about 75% of time.
I have felt - pin pricks (a couple seconds in tongue), my teeth are numb, the roof of my mouth is numb. I have felt pain up the back of my head. I have felt sensations on the top of my head. Just a small patch. I have felt pain out to ear cartilage (not inside the ear). I have had pain go up back of head. Also my scalp in middle is sometimes numb. I have had a few headaches. One or two took all day to go away. Others receeded the second I layed down. The numbness comes and goes. It seems to be related to movement. Primarily external pressure - vehicle movement, gravity when I bend, someone touches head. My head was numb for two days after pressure of putting on leads for evoke potentials test. If I carefully move my head, I seem to be ok. Although at one point, I would tilt my head very slight to look down in a file cabinet and it would be very difficult. Could only do for 2-3 minutes. I can't quite articulate the exact difficulty - not pain, not severe numbness-just strong discomfort.
I had my teeth cleaned in Nov. 1999. They would press on my teeth and I would feel it in my throat / face. At one point, my neck was sore. I rubbed the back of my neck right side where the tendon is and felt pressure on the front of my throat.
With all this, the migraine diagnosis just didn't click for me. I sought another neurologist. She did an MRA, evoke potentials, bloodwork for mini-strokes - all normal. Because the MRI of c-spine and c-spine x-rays were taken before the numbness in the face started; I begged to get them done again. MRI showed progression of the C5-6 problem - maybe instability - get x-rays. First x-rays showed no change. Rheumatologist tried to help. He said it didn't look like they took extra shots of high level c-spine in MRI. He said the flexion/extension did not look correctly taken. More x-rays of c-spine. They showed mild atlantoaxial instability. Went to neurosurgeon. He said this is common with RA nothing to worry about - its only about 4 mm. He thought hand numbness was related to carpul tunnel. He ordered upper EMG. It was normal. Neurosurgeon said neurologically I look pretty good.
This numbness gets better and worse many times per day. I'm usually pretty good in the morning when I get up. When I get dressed - it comes on. I don't know if it is brushing teeth, washing hair or what. But by the time I'm done, my face is numb (inside my mouth too). It has been on the left, right and middle of face/head. Sometimes it is just the middle. Neurosurgeon said this seemed neurologically impossible. After that, I verified sometimes it is just in the middle. Perhaps it comes from sides and receeds from sides.
I can make this come and go, by adjusting my position. I had one event after taking a long car ride where every time I stood up my face went extremely numb - I ran right back to bed. This happened when I needed the x-rays. I called the neurologist, I was getting scared. She said go get the x-rays. I got the x-rays and actually seemed to feel a little better, I was afraid I would get worse/pass out. The rad. report said it seemed to realign on flexion and extension.
Until this point my only strategy has been wear the cervical collar and try not to move my neck much. I'm looking for something more effective.
I feel very good in a pool with water up to my chin. All symptoms seem to receed.
Other info: ANA negative, RF positive, thyroid ok, B12 ok in 1998.
Meds: Enbrel started early 1999 - has my RA 90%+ under control-many joints have realigned with reduced inflammation. Celebrex, minocin,premarin/provera.
We tried to reduce minocin. RA got a little worse, numbness got a little better. Increased minocin; RA got a little better, numbness got a little worse. Coincidence? Possible inverse relation?
A couple weeks ago, I had dizziness/lightheadedness during mid day for a few days. This was when we were adjusting meds - minocin and premarin up. Related? Minocin is now up, premarin back down to .3.
Since this started 1 year ago, I do seem slightly better. I would say my head has tightened up a little. If I trip, I do not get numb for days, just an hour or two. I can do a little more without the numbness coming on - but, I can't do anything compared to others my age.
Here are my specific questions, any other advice would be appreciated. Currently my strategy is to see if I survive a teeth cleaning. If so, hang in there. If not, make an appointment with you. Everyone says they just don't know. Only one to give advice at all is rheumatologist. He says I've seen some pretty good people - Cleveland Clinic or Johns Hopkins - if I want to pursue. What do you think pursue or live with it?
I feel like something must be pushing on something when I move and laying perfectly aligned for an MRI does not allow it to be captured. Is there a test that might capture it? If so does the benefit outweigh the risks?
Does this sound like a structural problem to you? or disease process?
Because the double vision occurred during the brain MRI, might that picture have captured something that they didn't look for that might help explain this?
Would you recommend I see a psychiatrist? It is hard for me to believe this is in my head. I feel like I think my head is loose and the Drs. think a screw is loose. My sister says that I am sensitive to things wrong. I complained about my joints 5 years before they could confirm a diagnosis of RA. It came and went. Palindrom rheumatism I believe they called it.
Any thoughts you have would be greatly appreciated. What do you think I should do/consider doing.
Thank you so much for helping all of us on this board. Is there a way for individuals to contribute so more people can be helped.
I'm including the full history, so I don't leave out something important.
In the fall of 1998 I herniated a disk left side L5-S1. It was bad. Surgery went well - relieved intense pain. During physical therapy, I was doing situps in pool. Following this, I got buttocks,right leg numbness and pain shooting down the the right leg. Another MRI revealed nothing. X-rays nothing. Just live with it. I still have this.
In May 1999, I started experiencing numbness in little finger of left hand, then little finger of right, then ring, etc. Cervical MRI showed herniation at c5-6 - not touching spinal column. x-rays normal. When in the shower, I would tilt my head back and I could feel numbness come beneath both shoulder blades.
In July 1999, I turned my head far at an intersection when driving. It hurt, but with RA sometimes things hurt. About 1 hour later my face started to go totally numb. Mostly left side.
I also had heart palpitations. They seemed to come when I layed down. Heart palpitations were recorded/verified on device by primary. The heart palpitations have gone away now. They lasted a couple months.
I saw a neurologist. He ordered a brain scan, eeg. These were normal. When I got up from the brain scan, I had significant double vision that did not receed for about 45 minutes. I had one other episode of double vision when I layed down. I got up right away; it only lasted about 5 minutes. Diagnosis: migraine. When I got the migraine diagnosis, I had been numb for 4 weeks. I asked isn't this a little long for a migraine to last without any headache. He said yes. But, there is nothing seriously wrong with you. I was dismissed.
I figured if it was migraine, it wouldn't hurt to move my head. I tilted my head to look up, and the numbness in my face came on stronger for a few days. I stopped moving my head at this point.
In addition to the numbess, I get the feeling that someone is pressing on my throat. This can sometimes occur with every step.
I walk very gently. If I realign my head, I can get this to lessen/go away.
My head felt loose. Acceleration and deceleration in the car would cause my neck to crack and numbness come on. If I tripped over something numbness would come on strong and the pressure in the throat, too. It would last for a few days.
Rheumatologist suggested a cervical collar. I now wear that when I drive. When I put on the cervical collar, the facial numbness tends to receed, but a burning sensation tends to come at the base of my neck - near shoulders. This happens repeatably about 75% of time.
I have felt - pin pricks (a couple seconds in tongue), my teeth are numb, the roof of my mouth is numb. I have felt pain up the back of my head. I have felt sensations on the top of my head. Just a small patch. I have felt pain out to ear cartilage (not inside the ear). I have had pain go up back of head. Also my scalp in middle is sometimes numb. I have had a few headaches. One or two took all day to go away. Others receeded the second I layed down. The numbness comes and goes. It seems to be related to movement. Primarily external pressure - vehicle movement, gravity when I bend, someone touches head. My head was numb for two days after pressure of putting on leads for evoke potentials test. If I carefully move my head, I seem to be ok. Although at one point, I would tilt my head very slight to look down in a file cabinet and it would be very difficult. Could only do for 2-3 minutes. I can't quite articulate the exact difficulty - not pain, not severe numbness-just strong discomfort.
I had my teeth cleaned in Nov. 1999. They would press on my teeth and I would feel it in my throat / face. At one point, my neck was sore. I rubbed the back of my neck right side where the tendon is and felt pressure on the front of my throat.
With all this, the migraine diagnosis just didn't click for me. I sought another neurologist. She did an MRA, evoke potentials, bloodwork for mini-strokes - all normal. Because the MRI of c-spine and c-spine x-rays were taken before the numbness in the face started; I begged to get them done again. MRI showed progression of the C5-6 problem - maybe instability - get x-rays. First x-rays showed no change. Rheumatologist tried to help. He said it didn't look like they took extra shots of high level c-spine in MRI. He said the flexion/extension did not look correctly taken. More x-rays of c-spine. They showed mild atlantoaxial instability. Went to neurosurgeon. He said this is common with RA nothing to worry about - its only about 4 mm. He thought hand numbness was related to carpul tunnel. He ordered upper EMG. It was normal. Neurosurgeon said neurologically I look pretty good.
This numbness gets better and worse many times per day. I'm usually pretty good in the morning when I get up. When I get dressed - it comes on. I don't know if it is brushing teeth, washing hair or what. But by the time I'm done, my face is numb (inside my mouth too). It has been on the left, right and middle of face/head. Sometimes it is just the middle. Neurosurgeon said this seemed neurologically impossible. After that, I verified sometimes it is just in the middle. Perhaps it comes from sides and receeds from sides.
I can make this come and go, by adjusting my position. I had one event after taking a long car ride where every time I stood up my face went extremely numb - I ran right back to bed. This happened when I needed the x-rays. I called the neurologist, I was getting scared. She said go get the x-rays. I got the x-rays and actually seemed to feel a little better, I was afraid I would get worse/pass out. The rad. report said it seemed to realign on flexion and extension.
Until this point my only strategy has been wear the cervical collar and try not to move my neck much. I'm looking for something more effective.
I feel very good in a pool with water up to my chin. All symptoms seem to receed.
Other info: ANA negative, RF positive, thyroid ok, B12 ok in 1998.
Meds: Enbrel started early 1999 - has my RA 90%+ under control-many joints have realigned with reduced inflammation. Celebrex, minocin,premarin/provera.
We tried to reduce minocin. RA got a little worse, numbness got a little better. Increased minocin; RA got a little better, numbness got a little worse. Coincidence? Possible inverse relation?
A couple weeks ago, I had dizziness/lightheadedness during mid day for a few days. This was when we were adjusting meds - minocin and premarin up. Related? Minocin is now up, premarin back down to .3.
Since this started 1 year ago, I do seem slightly better. I would say my head has tightened up a little. If I trip, I do not get numb for days, just an hour or two. I can do a little more without the numbness coming on - but, I can't do anything compared to others my age.
Here are my specific questions, any other advice would be appreciated. Currently my strategy is to see if I survive a teeth cleaning. If so, hang in there. If not, make an appointment with you. Everyone says they just don't know. Only one to give advice at all is rheumatologist. He says I've seen some pretty good people - Cleveland Clinic or Johns Hopkins - if I want to pursue. What do you think pursue or live with it?
I feel like something must be pushing on something when I move and laying perfectly aligned for an MRI does not allow it to be captured. Is there a test that might capture it? If so does the benefit outweigh the risks?
Does this sound like a structural problem to you? or disease process?
Because the double vision occurred during the brain MRI, might that picture have captured something that they didn't look for that might help explain this?
Would you recommend I see a psychiatrist? It is hard for me to believe this is in my head. I feel like I think my head is loose and the Drs. think a screw is loose. My sister says that I am sensitive to things wrong. I complained about my joints 5 years before they could confirm a diagnosis of RA. It came and went. Palindrom rheumatism I believe they called it.
Any thoughts you have would be greatly appreciated. What do you think I should do/consider doing.
Thank you so much for helping all of us on this board. Is there a way for individuals to contribute so more people can be helped.
Doctor's Answer
by CCF Neuro[P] MD, RPS, Jul 16, 2000 12:00AM