Undiagnosed Double Vision and Facial Numbness

[John M.]

I am a 47 year old male who has been suffering from an undiagnosed neurological condition for almost a year and a half now, with symptoms including double vision and facial numbness.



The first symptom I had was a slight numbness/tingling in my forehead and scalp on the left side. Within days of this I started having double vision in which my right eye would not move to the right of center. This "horizontal diplopia" lasted for about 6 weeks, then cleared up mysteriously, but left some residual inability to fully abduct the right eye. Four weeks later I developed a similar diplopia, but this time in my left eye! This took about 8 months to resolve, but again left some residual abduction deficit. During all of this time, the numbness/tingling/stinging feeling in my face moved around, and has generally progressed. Now I have this feeling problem mainly on my nose, upper lip and cheeks on both sides in all cases. It is also present to a lesser extent on my forehead, temples, scalp and the roof of my mouth, again on both sides in all cases. This numbness is strange in that if I touch an affected area, I have a sensation of also being touched in surrounding areas. For example if I touch my cheek, I also feel it on my nose. Besides the tingling/numbness, I also occasionally get sharb stabbing, very localized pain somewhere on my cheek or lip which only lasts a second or two but which feels like a bee sting when it happens.  These seem to come randomly, with nothing which triggers them. I also have a slight tinnitus in my left ear which is a continuous, non-pulsating high frequency tone but I have had this for about three years and it has not worsened.



I have no weakness or numbness in my extremities, am in good physical shape, not overweight and exercise strenuously and regularly. I eat a well-balanced diet and have no known risk factors for any kind of acquired infection, except perhaps for Lyme disease.



The only medications I take are for for essential hypertension (Altace and hypochlorothiazide)and mild arthritis in my joints (Celebrex). Both conditions are now well controlled.



I have been examined by my family doctor, two neurologists, an opthoneurologist and an Ear Nose and Throat specialist.



Tests I have had include, CT, MRI, MRI with gadolinium, MRA, CT for bone structures, two lumbar punctures, enlon/tensilon test, hearing and balance tests, evoked potential EEG, physical exam, visual field test, eye pressure test, and many, many blood tests.



All tests returned absolutely normal results. The MRI's were apparently very high quality an showed no structures or plaques, to a submillimeter resolution. There were no ogonoclonal bands in the CSF, no evidence of diabetes in blood tests. There is no family history of such problems and I have never experienced any similar problems before.



Any help you could provide would be most appreciated.

[CCF Neuro[P] MD, RPS]

Dear John M.



Sorry that your having such problems with your vision and numbness.  Most of what I was thinking might be the cause of your problems were ruled out based on all your normal testing.  By any chance did you have a viral illness maybe 2-4 weeks before all the symptoms began?  Some of the Herpes family of viruses can induce a vasculitis that might be a cause, but it would be very doubtful with a normal MRI.  Do you have any problems with sleep, such as snoring loudly, frequent trips to the bathroom, daytime sleepiness....   There are some cases of increased intracranial pressure occurring only at night in people who have sleep disorders.  Increased ICP might give you abduction problems with your eyes and paraesthesias.  But I am at a loss on what to tell you.  Sorry.



Sincerely,



CCF Neuro MD

[John M.]

Thanks so much your very prompt reply and helpful information.



I had no viral illness prior to the start of symptoms, but did have a very bad headache which lasted several days, with pain around my eyes just before the second time I got double vision. I've never had such a long-lasting headache before or since.

I wonder if this might be relevant. As far as I know, I have never had any form of Herpes or related virus. I occasionally snore (according to my wife) but other than this I have no sleep disorders except that I sometimes have bouts of "Restless Leg Syndrome" in my right leg just before falling asleep. I don't have a frequent urination problem or daytime sleepiness. The last neurologist I saw suggested that maybe all of my problems are somatic , like in psychosomatic but I find this hard to believe.  



Again, thanks for your comments.   John M.

[Judy - Follow-up question]

I have similar problems, less the eye troubles. (I had 2 minor bouts of double vision lasting one about 45 min., the other about 5 minutes.) I also have sensory issues with arms, legs, back etc.



I've been trying to find the answer for 2 or more years. I am slowly getting better - head stuff anyways. I hope you do too.



If you find the answer, please post. I will as well.

I went to be evaluated at the Cleveland Clinic. They are looking at a congenital defect at c1/2, not yet proven or disproven, but my odontoid looked different than expected. They requested more x-rays and I have sent them. I'm waiting to hear back.



I'm not sure that the neuro thought this problem was related to the head symptoms.



I hope you find your answer soon.

Judy

[JUDITH EWALD]

HELLO,  VERY SYMPATHETIC TO YOUR CONDITION...MY 16 YR. OLD IS IN ALMOST THE SAME CONDITION, THAT'S WHY IT CAUGHT MY EYE. sEVERE HEADACHE, RINGING IN EARS, HEARING LOSS, DOUBLE VISION, DILATED AND UNRESPONDING PUPILS FROM TIME TO TIME, ONE SIDED LOSS OF FEELING TO AN EXTENT, MUSCLE WEAKNESS, TREMORS, NIGHT SWEATS, INCONTINENCE, UNSTEADY GAIT.  THE LIST GOES ON.  HIS MUSCLES ARE SO TIGHT RIGHT NOW THAT HE CAN'T EVEN BEND DOWN TO PICK UP SOMETHING WITHOUT FALLING BACKWARDS.  

IT'LL BE ONE YR. ON FEB. 2ND., WHEN ALL OF THIS BEGAN.  HE HAD A HERNIA REPAIR SURGERY GONE BAD.  THE HERNIA WAS NOT ONLY REPAIRED, BUT HE WAS ALSO UNLUCKY ENOUGH TO BE DEPRIVED OF OXYGEN DURING HIS SURGERY.  THIS IS CALLED CEREBRAL HYPOXIA(DEPRIVATION OF OXYGEN TO THE WHOLE BRAIN) IT CAN ONLY BE SEEN WITH A "PET" SCAN.  HE NOW HAS CEREBRAL PALSY BECAUSE OF THE LACK OF OXYGEN AND THE ABNORMAL GAIT (WALK) HAS CAUSED HIM TO SUFFER A SHIN SPLINT, IN WHICH HE WILL BE CAST THIS WEEK FOR.  THAT PAIN IS SEVERE.  HE HAS THE STRENGH OF AN 8 YR. OLD GIRL THE DOC SAID.  

****I EXPLAINED ENOUGH ABOUT HIM TO FILL YOU IN.  DID YOU SUFFER AN EPISODE OF OXYGEN DEPRIVATION BY CHANCE.

****HAVE YOU BEEN CHECKED FOR GILLIAN BARRE SYNDROME???

KEEP FIGHTING FOR AN ANSWER, AND DON'T AT ALL THINK IT IS IN YOUR HEAD.  NUMEROUS HOSPITALS WANTED TO PUT MY SON IN THE MENTAL WARD BECAUSE THEY THOUGHT THE SME THING...EVEN WHEN HE WAS VOMITING BLOOD AND DUMPING IT THE TOILET. CAN YOU BELIEVE THEY DIDN'T EVEN DETECT THE BIG BLEEDING ULCER HE HAD GOTTEN OUT OF ALL THIS?  THEY SAID HE HAD A HEMMOROID, AND WAS VOMITING BLOOD BECAUSE HE HAD SUFFERED A TEAR FROM VOMITING SO MUCH.  PAIN EQUALS DAMAGE AND IS LETTING YOU KNOW SOMETHING IS WRONG. HOW MANY ADULTS AND CHILDREN ARE SUFFERING IN A MENTAL WARD RIGHT NOW WITH PAIN LIKE YOURS AND MY SON'S BECAUSE IT'S "ALL IN THEIR HEAD".  PLEASE KEEP PURSUEING THIS, MY PRAYERS WILL BE WITH YOU.  DON'T GIVE UP. MY EMAIL IS ***@**** IF YOU WOULD LIKE TO LET ME KNOW HOW YOU MADE OUT.  TAKE CARE, JUDITH

[JUDITH EWALD]

HELLO,  VERY SYMPATHETIC TO YOUR CONDITION...MY 16 YR. OLD IS IN ALMOST THE SAME CONDITION, THAT'S WHY IT CAUGHT MY EYE. sEVERE HEADACHE, RINGING IN EARS, HEARING LOSS, DOUBLE VISION, DILATED AND UNRESPONDING PUPILS FROM TIME TO TIME, ONE SIDED LOSS OF FEELING TO AN EXTENT, MUSCLE WEAKNESS, TREMORS, NIGHT SWEATS, INCONTINENCE, UNSTEADY GAIT.  THE LIST GOES ON.  HIS MUSCLES ARE SO TIGHT RIGHT NOW THAT HE CAN'T EVEN BEND DOWN TO PICK UP SOMETHING WITHOUT FALLING BACKWARDS.  

IT'LL BE ONE YR. ON FEB. 2ND., WHEN ALL OF THIS BEGAN.  HE HAD A HERNIA REPAIR SURGERY GONE BAD.  THE HERNIA WAS NOT ONLY REPAIRED, BUT HE WAS ALSO UNLUCKY ENOUGH TO BE DEPRIVED OF OXYGEN DURING HIS SURGERY.  THIS IS CALLED CEREBRAL HYPOXIA(DEPRIVATION OF OXYGEN TO THE WHOLE BRAIN) IT CAN ONLY BE SEEN WITH A "PET" SCAN.  HE NOW HAS CEREBRAL PALSY BECAUSE OF THE LACK OF OXYGEN AND THE ABNORMAL GAIT (WALK) HAS CAUSED HIM TO SUFFER A SHIN SPLINT, IN WHICH HE WILL BE CAST THIS WEEK FOR.  THAT PAIN IS SEVERE.  HE HAS THE STRENGH OF AN 8 YR. OLD GIRL THE DOC SAID.  

****I EXPLAINED ENOUGH ABOUT HIM TO FILL YOU IN.  DID YOU SUFFER AN EPISODE OF OXYGEN DEPRIVATION BY CHANCE.

****HAVE YOU BEEN CHECKED FOR GILLIAN BARRE SYNDROME???

KEEP FIGHTING FOR AN ANSWER, AND DON'T AT ALL THINK IT IS IN YOUR HEAD.  NUMEROUS HOSPITALS WANTED TO PUT MY SON IN THE MENTAL WARD BECAUSE THEY THOUGHT THE SME THING...EVEN WHEN HE WAS VOMITING BLOOD AND DUMPING IT THE TOILET. CAN YOU BELIEVE THEY DIDN'T EVEN DETECT THE BIG BLEEDING ULCER HE HAD GOTTEN OUT OF ALL THIS?  THEY SAID HE HAD A HEMMOROID, AND WAS VOMITING BLOOD BECAUSE HE HAD SUFFERED A TEAR FROM VOMITING SO MUCH.  PAIN EQUALS DAMAGE AND IS LETTING YOU KNOW SOMETHING IS WRONG. HOW MANY ADULTS AND CHILDREN ARE SUFFERING IN A MENTAL WARD RIGHT NOW WITH PAIN LIKE YOURS AND MY SON'S BECAUSE IT'S "ALL IN THEIR HEAD".  PLEASE KEEP PURSUEING THIS, MY PRAYERS WILL BE WITH YOU.  DON'T GIVE UP. MY EMAIL IS ***@**** IF YOU WOULD LIKE TO LET ME KNOW HOW YOU MADE OUT.  TAKE CARE, JUDITH

[RENZO]

I, sorry for your conditions. I had similar but minor synmtomps as yours. My major problem was the neck. I find out to have

"Eagle's syndrome". It is the abnormal length of the styloid process of the temporal bon and/or the calcification of a ligament departing from the styloid, such that when one moves the neck it interacts with muscles and/or facial nerves (giving numbness too). I made MRI TAC X rays andwhatever for years  but to see it one need the proper projection and not only the latest analysis machines. So what I needed was a regular dental panoramic  (not for the tooth of course) where you can see it well.

Since it is an easy exam and possibly you have it allready (even a not recent one could do) I advice you to exclude this patology too. Be careful, if a doctor don't know the disease that bone could be overlooked as happened to me, 'cause it is a rare disease.



ren.***@****

[Melissa Webster]

I have read all of your symptoms, and can see some of mine.  About nine months ago, the right side of my face started having twitches.  First my eye was twitching, then, my eye lid, then, cheek, chin, eyebrow, etc.  It was all on my right side of my face.  Then, I started getting this strange problem with every time I would open my mouth, chew, lick my lips, smile, spit, my right eye would close.  I can not control it.  I have double vision at times, and frequent high pitched ringing in my ears.  I have seen my family doctor, and a Catscan was ordered.  So, far, nothing has become of that.  I am wondering if they will think its all in my head also.