RECENT CONVERSATION WITH MOMZILLA

[young at heart]

I HAVE HAD A FEW CONVERSATIONS WITH CHRIS(AKA--MOMZILLA,ZILLA,TWINKLE TOES)

WHAT AN AWESOME AND INSPIRING LADY,SO SWEET AND COMPASSIONATE TO TALK WITH.

I PROMISED MOMZILLA I WOULD POST INFORMATION HERE ON A THE FORUM OF NYSTAGMUS CALLED INO,ITS ASSOCIATED WITH MS AND A CLASSIC SYMPTOM,NOT ASSOCIATED WITH OTHER DISORDERS.

TO TIRED TONIGHT TO POST THE FULL NAME.

MANY NEURO'S,NEURO-OPTHAMOLOGIST OVER LOOK IT .I CALLED MY NEURO-OTOLOGIST,WHOM I SEE TOMORROW,HE WILL GIVE ME THE PROPER AND CORRECT IMFORMATIOM TO POST ON THIS FORUM OF NYSTAGMUS AND WHAT TYPES ARE TYPICAL WITH MS.

I HAVE THIS NYSTAGMUS,MANY PATIENTS ARE DIAGNOSED WITH NYSTAGMUS,BUT THE CAUSE IS OVER LOOKED AND IT TRUELLY NEEDS TO BE FURTHER ADDRESSED AND THE CAUSE FOUND.

INO IS DIAGNOSED THROUGH AN EVOKED POTENTIAL TEST,NOT THE NORMAL EVOKED POTENTIAL THAT A NEUROLOGIST NORMALLY DOES.

THE TEST IS A VNG, MANY AUDIOLOGIST STILL USE THE ENG,BUT THIS TEST IS OUT DATED FOR THE PURPOSE OF NYSTAGMUS AND INO.

I WAS INTERDUCED TO THE VNG A FEW YEARS BACK BECAUSE OF BALANCE ISSUES,NOT RELATED TO DIZZINESS NOR VERIGO.

TO MY AMAZEMENT IT CAME BACK WITH INO, NEURO-SENSORI HEARING LOSS.THROUGH THIS TEST A LESION WAS DETECTED IN OR NEAR THE BRAIN STEM AND IN THE LEFT PART OF MY BRAIN.DANG MRI DIDN'T DETECT.

NEURO-SENSORI HEARING LOSS IS USUALLY PERCEIVED TO BE FROM LOUD NOICES,THROUGH A VNG,THIS TEST CAN DETECT LESIONS NOT FOUND ON MRI'S.

CHRIS ALSO SUFFERS FROM NEURO-SENSORI HEARING LOSS AND HAS HEARING AIDES,SHE INSPIRED ME TO FINALLY GET MINE.

HEARING LOSS WITH MS, IS RARE,BUT DOES OCCUR.

I WILL POST ON INO AND HEARING LOSS ASSOCIATED WITH MS TOMORROW.

I CAN'T STRESS ENOUGH,IF YOU HAVE BALANCE ISSUES(MINE NOT ASSOCIATED WITH DIZZINESS NOR VERTIGO),WITH DIZZINESS VERTIGO OR TINNITIS(RINGING IN THE EARS),PLEASE ASK TO BE REFERRED TO AN AUDIOLOGIST OR A NEURO-OTOLOGIST,MY GP REFERRED ME,I JUST ASK HIM.

PLEASE DON'T LET A NEUROLOGIST DISCOURAGE YOU,IF YOUR BALANCE IS OFF,EVEN IF THE ROMBERG TEST IS NORMAL,AND A NEURO STATES ITS ALL NORMAL,PLEASE BE YOUR OWN ADVOCATE AND GET THE FURTHER TESTING,ESPECIALLY WHEN YOU KNOW SOMETHING IS WRONG.

IF YOUR VISUAL AND HEARING IS WONKY,THE BALANCE WILL BE WONKY.

ZILLA, HAS BEEN SUCH AN INSPIRATION TO ME,THAT I FINALLY KNEW IT WAS TIME,EVEN THOUGH I'VE KNOWN SINSE DECEMBER THE LEFT EAR NEEDED THE HEARING AIDE,BUT NOW BOTH EARS NEED THEM.

THANKS MOMZILLA FOR THAT EXTRA PUSH.THROUGH YOUR GENTLE,LOVING AND CARING WORDS YOU HAVE MADE SUCH A DIFFERENCE IN MY LIFE ,DEALING WITH BOTH DISEASES.

ZILLA KNOWS MY DR. THAT DONE MY REVISION BACK SURGERY,WHOM I REFER TO AS HARRY BLUE EYES,SHE WILL AGREE HE'S A LOOKER.

HOPING TO MEET ZILLA SOON.

I AM SO HAPPY Z, THAT YOU HAD YOU WEAKNESS DOCUMENTED, TO ALL IF A SYMPTOM APPEARS AND ITS THERE 24 HOURS PLEASE,PLEASE GET IT DOCUMENTED,EVEN BY YOUR GP.ALL THIS WILL PUT THE PUZZLE PEICES TOGETHER AT SOME POINT.

DON'T EVER OVER LOOK A SYMPTOM.

WILL POST TOMORROW WITH MORE IMFORMATION  UNDER A DIFFERENT HEADING.I HOPE THIS IMFORMATION WILL HELP MANY.


HUGS AND PRAYERS

T-LYNN

[sllowe]

THANK YOU SO MUCH FOR THIS "T."

I CAN CUT AND PASTE THE INFO YOU ADD TO THIS TOPIC AND MAKE A HEALTH PAGE ON IT.  THAT WAY, IT WON'T GET BURIED AND LOST IN A THREAD OVER TIME.

I'M SO HAPPY FOR YOU AND MAMA Z TO HAVE SUCH A GREAT CONVO - I'M SURE IT'S JUST WHAT THE DR. ORDERED FOR BOTH OF YOU.

I LOOK FORWARD TO HEARING ABOUT THE VISIT.

IF YOU COMMUNICATE WITH Z SOONER THAN I, PLEASE SEND HER MY LOVE.

LET ME KNOW TOO IF THERE IS SOMETHING I CAN DO TO HELP THE TOPIC ALONG REF. RESEARCH.

MUCH LOVE TO YOU AND A BIG THANKS FOR BRINGING THIS UP - IT IS IMPORTANT.

HUGS,
SHELL

[Fluffysmom]

THANK YOU VERY MUCH FOR THE INFO.  MY SECOND NEURO NOTED ON EXAM "WITH FATIGUE OF EYE MOVEMENTS SHE MAY HAVE SUBCLINICAL INO WITH RAPID SACCADES"  SHE DIDN'T MENTION IT TO ME; IT WAS IN MY CHART NOTES.

I ASKED MY OPHTHAMOLOGIST ABOUT IT, AND ABOUT A VNG, AND HE SAID I WOULD HAVE TO SPEAK TO MY NEUROLOGIST ABOUT THAT.  AFTER A CLEAR LP, MY NEURO DECIDED NOT TO PURSUE ANYTHING ELSE, AND I'VE HAD TO MOVE ON TO A NEW ONE, AN MS SPECIALIST, AND WE HAVEN'T DISCUSSED THAT, AND APPARENTLY IT DIDN'T SHOW UP ON THE NEURO TESTING SHE'S DONE SO FAR.

I'M HAVING TROUBLE WITH DIZZINESS AND JUMPY/BLURRY VISION, LACK OF BALANCE, ETC.,  AND AM ONCE AGAIN CURIOUS ABOUT A VNG; MAYBE WHEN I SEE HER ON NOV. 12 WE CAN DISCUSS IT.  I DON'T HAVE A DIAGNOSIS.

I HAD MY HEARING TESTED 2 YEARS AGO AND IT WAS GREAT; I'VE ALWAYS HAD REALLY ACUTE HEARING.  I'VE BEEN NOTICING THAT I AM MISSING THINGS, ESPECIALLY WHEN I'M IN A SITUATION WHERE THERE IS A LOT OF BACKGROUND NOISE, SO IT MIGHT JUST BE SOMETHING TO DO WITH MY ABILITY TO CONCENTRATE OR SOMETHING.  

I APPRECIATE YOUR TAKING THE TIME TO TYPE THIS UP, AND FOR REMINDING  ME OF AN AVENUE TO FOLLOW WITH MY NEURO.

HUGS,

KATHY

[young at heart]

SHELL AND KATHY,

I HAVE NOT FORGOTTEN TO POST THE INO.

MY VNG REPORT CAME BACK REALLY BAD, SO TRYING TO ABSORB.

KATHY,

IF YOUR HAVING BALANCE ISSUES AND SO FORTH,IT'S ALSWAYS A PLUS TO HAVE THE VNG.

ITS A TEST MANY NEURO'S OVER LOOK AND IGNORE.IT CAN GIVE INSIGHT TO WHY A PERSON HAS BALANCE DISORDERS.

IT CAN TELL IF ITS A CENTRAL NERVOUS SYSTEM OR PERIPHERAL DISORDERD.

TO MANY NEURO'S RELY ON THE BASIC EVOKED POTENTALS AND THE VNG CAN GIVE HELP IN SEVERAL WAYS.

TO MY KNOWLEDGE INO IS MAINLY DETECTED THROUGH THE VNG.INO IS AN OVERLOOKED SYMPTOM.

WILL POST THE INFO SOON

T-LYNN

[Momzilla]

HEY, GIRL~

I AM REALLY GLAD YOU POSTED.  I AM LOOKING FORWARD TO HEARING MORE ABOUT WHAT WE TALKED ABOUT.  

sO, WHAT THE HECK IS GOING ON?  i KNOW WE WILL TALK ON THE PHONE, BUT I AM WORRIED ABOUT THE REPORT YOU JUST GOT.  WHAT'S UP?  DO YOU FEEL LIKE TELLING ABOUT IT?  I'M WORRIED.

LEAVE ME A NOTE, OR I'LL CALL YOU TOMORROW ABOUT OUR HASH BROWN PLANS.  IF WE HAVE TO RESCHEDULE, MAYBE I CAN DRIVE DOWN ON ONE OF MY DAYS OFF.  DON'T MAKE ME HUNT YOU DOWN!!!

LOVE AND HUGS,

Z*

[mokibear]

THANKS FOR THE REALLY GOOD INFO T, I KNOW THIS WILL HELP A LOT OF PEOPLE ON THIS FORUM. IT IS GOOD FOR US TO BE INFORMED AND THANK YOU FOR TAKING THE TIME TO DO THIS.

I'M SORRY YOUR REPORT IS NOT GOOD HON. WHEN YOU ARE READY, YOU KNOW WE ARE HERE FOR YOU WHEN YOU WANT TO TALK ABOUT IT.

LOVE AND HUGS
MOKI