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.***@****
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
Have been experianceing numbness of the forehead an lips an blurried vision...it seems like it happens when I'm in one room for to long..its bugging me I hate it and iam wishin it would go away...I just feel it should not be happening its been happenin for a couple of mths...I'm only 22 y is it happening? Plz help if anyone can would very apperiate it...thanks
Ashley
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.
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
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.
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
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