Aa
ENT diagnosises MS
Okay I saw the ENT re vertigo/balance and difficulty swallowing. He listened to me. He asked questions. He did my exam and said physically it appeared normal. He is sending me for a VNG on the 18th.
His analysis...problems caused by lesions/MS. Wants to know why I don't have a formal dx of MS. Wants to know what the neuros plans are. I told him there were no plans. He asked what they were treating me with. I told him nothing. He looks at me and says, Isn't anyone listening to you, examining you, reading the reports? Why can you not get a dx? He goes on to tell me he cannot refer me to a neuro but he can give me the name and number of a neuro located in WV who he believes I should see. When I told him who my neuro was, just before he asked me to see this other doctor, he didn't say anything negative but I could tell he was not impressed.
I am going to get my GP to write the referral ASAP. It astonishes me that he can see what everyone else can't. He even watched me walk and then said, You have difficulty walking don't you. Then he asks if I have feeling or decreased feeling in my feet. He listened while explained the constant buzzing and difficulty walking/changing surfaces. He also ask for copies of my MRI, CT, BAER, etc.
He truly amazed me. Now if only he were a neuro. or my neuro cared as much. Anyways, he has renewed my hopes of getting a dx. Still I am not going to get too hopeful. It is too hard when you are let down.
But I am smiling for now. I am also tired. It is 11:30 pm here and time for bed.
See you all tomorrow.
terry :-)
His analysis...problems caused by lesions/MS. Wants to know why I don't have a formal dx of MS. Wants to know what the neuros plans are. I told him there were no plans. He asked what they were treating me with. I told him nothing. He looks at me and says, Isn't anyone listening to you, examining you, reading the reports? Why can you not get a dx? He goes on to tell me he cannot refer me to a neuro but he can give me the name and number of a neuro located in WV who he believes I should see. When I told him who my neuro was, just before he asked me to see this other doctor, he didn't say anything negative but I could tell he was not impressed.
I am going to get my GP to write the referral ASAP. It astonishes me that he can see what everyone else can't. He even watched me walk and then said, You have difficulty walking don't you. Then he asks if I have feeling or decreased feeling in my feet. He listened while explained the constant buzzing and difficulty walking/changing surfaces. He also ask for copies of my MRI, CT, BAER, etc.
He truly amazed me. Now if only he were a neuro. or my neuro cared as much. Anyways, he has renewed my hopes of getting a dx. Still I am not going to get too hopeful. It is too hard when you are let down.
But I am smiling for now. I am also tired. It is 11:30 pm here and time for bed.
See you all tomorrow.
terry :-)
Quix you are not crazy. I thought the same thing of myself. Then ess told me my post had posted twice. I had responses on both. I had even past again with...Weird. Where did all the other responses go? So rest easy we may have cheese for brains as you say but we are not crazy. At least not yet :) Thanks for being on my side.
T-LYNN, THANKS FOR THAT WONDERFUL EXPLANATION. MY TEST IS SCHEDULED FOR THE 18TH. I TAKE ALL THE INFO I CAN GET FROM WHEREVER I CAN GET IT.
AT TIMES WHEN I TRACK A PEN LIGHT FOR THE DOC I CAN FEEL MY EYES MOVING IN JERKS. THERE ARE ALSO TIMES, STARTING ABT 3 YRS AGO THAT MY EYES BEGAN TO MOVE RAPIDLY LEFT TO RIGHT. IN THE BEGINNING I DID NOT KNOW WHAT IT WAS. THE ENT SAID HE COULD SEE NYSTAGMUS WHEN CHECKING MY EYES. THE VNG HE SAID WOULD TELL HIM HOW BAD. ???
To all of you others who have responded or written me notes I cannot tell you how much it means to me. I try so very hard not to over tax my family with my problems. I don't hide them but i try not to focus on them over much. Without you guys I would have no outlet for my emotions, frustrations, etc. and I would not get all this wonderful information and encouragement. I just hope I can reciprocate in some small measure. You are truly friends.
terry
T-LYNN, THANKS FOR THAT WONDERFUL EXPLANATION. MY TEST IS SCHEDULED FOR THE 18TH. I TAKE ALL THE INFO I CAN GET FROM WHEREVER I CAN GET IT.
AT TIMES WHEN I TRACK A PEN LIGHT FOR THE DOC I CAN FEEL MY EYES MOVING IN JERKS. THERE ARE ALSO TIMES, STARTING ABT 3 YRS AGO THAT MY EYES BEGAN TO MOVE RAPIDLY LEFT TO RIGHT. IN THE BEGINNING I DID NOT KNOW WHAT IT WAS. THE ENT SAID HE COULD SEE NYSTAGMUS WHEN CHECKING MY EYES. THE VNG HE SAID WOULD TELL HIM HOW BAD. ???
To all of you others who have responded or written me notes I cannot tell you how much it means to me. I try so very hard not to over tax my family with my problems. I don't hide them but i try not to focus on them over much. Without you guys I would have no outlet for my emotions, frustrations, etc. and I would not get all this wonderful information and encouragement. I just hope I can reciprocate in some small measure. You are truly friends.
terry
I must have been VERY sick, lol. I was certain that I wrote you a note and told you how glad I am that one of your doctors has seen "the whole picture." Having someone in your corner telling people to shape up can be invaluable.
The ENT sees it. And will tell whomever he communicates with the same thing. I do think you are approaching the final exit of the Limboland Tollway. It's not a freeway, because you pay so much in tolls along its route.
All these fine people gave you wonderful thoughts.
T-LYNN - THANK YOU FOR THAT WONDERFUL DESCRIPTION AND EXPLANATION OF THE VNG. I AM GOING TO COPY IT AND PUT IT IN THE HEALTH PAGE ON VERTIGO.
QUIX
The ENT sees it. And will tell whomever he communicates with the same thing. I do think you are approaching the final exit of the Limboland Tollway. It's not a freeway, because you pay so much in tolls along its route.
All these fine people gave you wonderful thoughts.
T-LYNN - THANK YOU FOR THAT WONDERFUL DESCRIPTION AND EXPLANATION OF THE VNG. I AM GOING TO COPY IT AND PUT IT IN THE HEALTH PAGE ON VERTIGO.
QUIX
TERRY,
A VNG HAS 3 PARTS TO IT,IF YOU DO INDEED HAVE NYSTAGMUS,THE VNG WILL DETECT IT.
THE FIRST PART IS TO TEST FOR ANY OCULAR MOTOR DISORDERS,---THEY HAVE YOU TRACK LITTLE RED LIGHTS ON A BLACK BAR WITH THE ROOM DARK..THEY WILL SEE IF YOUR EYES CAN FOLLOW THE LIGHTS.
THE SECOND PART,--HALL PIKE--THEY WILL HAVE YOU SIT UP AND LAY DOWN QUICKLY TO SEE IF THE RESPONSE IS NORMA OR ABNORMAL.ABNORMAL IS PERIFERAL OR VESTIBULAR.
THIRD,THE CALORIC TEST,---THEY PUT WARM AND COLD WATER INTO THE EAR CANAL TO CHECK FOR RESPONSES.THIS TEST WILL TELL ALSO IF ITS CENTRAL OR PERIPHERIAL.
IN 2006,I HAD AN ABNORMAL OCULAR MOTOR TEST,THE REST NORMAL,RESULTS STATED CENTRAL NERVOUS SYSTEM DISEASE
IN OCT 2008,THE TEST RESULTS CAME BACK PROGRESSIVE OCULAR MOTOR DISORDER,NYSTAGMUS ABSENT(NYSTAGMUS SHOULD BE PRESENT).
THE CALORIC CAME BACK ABSENT
BOTH DETECTING A CENTRAL NERVOUS SYSTEM DISEASE
HOPEFULLY YOUR TEST WILL BE SCHEDULED SOON,SOME NEUROLOGIST RECONIZE THE TESTING,OTHERS DON'T.I DON'T INTEND TO DISCOURAGE YOU.NEW VNG MACHINES WILL LOCALIZE AND PIN POINT THE EXACT AREA OF INTERUPTIONS,OLDER MACHINES CAN DEPICT AREAS OF THE BRAIN,HOWEVER BE NON LOCALIZING.---I HOPE THAT MADE SENSE.
LIKE I STATED VNG'S ARE VERY USEFUL TEST.THEY ARE THE SAME CALIBER AS THE EVOKED POTENTALS.
T-LYNN
A VNG HAS 3 PARTS TO IT,IF YOU DO INDEED HAVE NYSTAGMUS,THE VNG WILL DETECT IT.
THE FIRST PART IS TO TEST FOR ANY OCULAR MOTOR DISORDERS,---THEY HAVE YOU TRACK LITTLE RED LIGHTS ON A BLACK BAR WITH THE ROOM DARK..THEY WILL SEE IF YOUR EYES CAN FOLLOW THE LIGHTS.
THE SECOND PART,--HALL PIKE--THEY WILL HAVE YOU SIT UP AND LAY DOWN QUICKLY TO SEE IF THE RESPONSE IS NORMA OR ABNORMAL.ABNORMAL IS PERIFERAL OR VESTIBULAR.
THIRD,THE CALORIC TEST,---THEY PUT WARM AND COLD WATER INTO THE EAR CANAL TO CHECK FOR RESPONSES.THIS TEST WILL TELL ALSO IF ITS CENTRAL OR PERIPHERIAL.
IN 2006,I HAD AN ABNORMAL OCULAR MOTOR TEST,THE REST NORMAL,RESULTS STATED CENTRAL NERVOUS SYSTEM DISEASE
IN OCT 2008,THE TEST RESULTS CAME BACK PROGRESSIVE OCULAR MOTOR DISORDER,NYSTAGMUS ABSENT(NYSTAGMUS SHOULD BE PRESENT).
THE CALORIC CAME BACK ABSENT
BOTH DETECTING A CENTRAL NERVOUS SYSTEM DISEASE
HOPEFULLY YOUR TEST WILL BE SCHEDULED SOON,SOME NEUROLOGIST RECONIZE THE TESTING,OTHERS DON'T.I DON'T INTEND TO DISCOURAGE YOU.NEW VNG MACHINES WILL LOCALIZE AND PIN POINT THE EXACT AREA OF INTERUPTIONS,OLDER MACHINES CAN DEPICT AREAS OF THE BRAIN,HOWEVER BE NON LOCALIZING.---I HOPE THAT MADE SENSE.
LIKE I STATED VNG'S ARE VERY USEFUL TEST.THEY ARE THE SAME CALIBER AS THE EVOKED POTENTALS.
T-LYNN
Hi Terry,
What encouraging news!! Finally someone who listened and looked at you and what you are going through!!
I am so excited for you and hope you get in to see that new neuro ASAP. I understand your reluctance to get too excited, but it does sound like you have someone in the medical profession who is on your side for a change.
Take care of yourself and think positive thoughts about this new neuro. I'll be praying for things to go well and for this neuro to be a keeper.
Hugs,
doni
What encouraging news!! Finally someone who listened and looked at you and what you are going through!!
I am so excited for you and hope you get in to see that new neuro ASAP. I understand your reluctance to get too excited, but it does sound like you have someone in the medical profession who is on your side for a change.
Take care of yourself and think positive thoughts about this new neuro. I'll be praying for things to go well and for this neuro to be a keeper.
Hugs,
doni
Wobbley, sam. and t-lynn thanks for your encouragement.
I am definitely getting a new neuro. I reported my first to the medical board because he would not release my records. He finally did and all I got was 3 appts. The initial exam was not included, that was when I was at my worst. The records I did get were so full of BS I was shocked. He said things like patient reports no bladder or bowel problems. I had and was told he didn't atep outside his specialty, to report it to my GP. That is just one example. The notes were typed, not the ones from the chart I requested and not signed so they are not official.
Sam, my heart goes out to you. It seems you have so much to deal with. You must be a strong woman. I keep you and all the others in my prayers.
This ENT also said he believed my vertigo was central. The VNG he ordered, he said I saw some nystagus when I was examining your eyes.
So I am hanging in there.
terry
I am definitely getting a new neuro. I reported my first to the medical board because he would not release my records. He finally did and all I got was 3 appts. The initial exam was not included, that was when I was at my worst. The records I did get were so full of BS I was shocked. He said things like patient reports no bladder or bowel problems. I had and was told he didn't atep outside his specialty, to report it to my GP. That is just one example. The notes were typed, not the ones from the chart I requested and not signed so they are not official.
Sam, my heart goes out to you. It seems you have so much to deal with. You must be a strong woman. I keep you and all the others in my prayers.
This ENT also said he believed my vertigo was central. The VNG he ordered, he said I saw some nystagus when I was examining your eyes.
So I am hanging in there.
terry
ITS AMAZING WHAT ONE SPECIALIST SEES VERSUS ANOTHER.MY MS SPECIALIST IS UNCONVENTIONAL TO SAY THE LEAST.HE STAED THE NEW ERA OF NEUROLOGIST ARE TEXT BOOK DRS.
A VNG IS A VERY RELIABLE TEST,IT WILL DEFINE IF DIZZINESS AND BALANCE ISSUES ARE CENTRAL OR PERIPHERIAL.THIS IS A TEST USUALLY OVERLOOKED BY NEURO'S AS HAVING GREAT SIGNIFICANTS IN A DIAGNOSIS OF MS.
AN EXAMPLE A VNG IS THE ONLY TEST THAT CAN TELL IF ONE HAS INO--A FORM OF NYSTAGMUS ASSOCIATED WITH MS.AND USUALLY MS ONLY.
I HOPE YOU GET INTO THE DIFFERENT NEURO AND SOON.
T-LYNN
A VNG IS A VERY RELIABLE TEST,IT WILL DEFINE IF DIZZINESS AND BALANCE ISSUES ARE CENTRAL OR PERIPHERIAL.THIS IS A TEST USUALLY OVERLOOKED BY NEURO'S AS HAVING GREAT SIGNIFICANTS IN A DIAGNOSIS OF MS.
AN EXAMPLE A VNG IS THE ONLY TEST THAT CAN TELL IF ONE HAS INO--A FORM OF NYSTAGMUS ASSOCIATED WITH MS.AND USUALLY MS ONLY.
I HOPE YOU GET INTO THE DIFFERENT NEURO AND SOON.
T-LYNN
Hi
i had the same experience my ENT said my vertigo was central and could not believe this was all down to fibro and had to be something else he was shocked that i had MRI done without contrast and ordered one done of the brain with contrast but he said i cant dx you but at least one will be ready for him,its a 5-6 week wait for that it's different here in the UK we dont get to choice who we see we can chose the hospital but this has only happened in the last few yrs,i told him i was waiting to see another neuro (still waiting) so i hope they will do proper test this time this is the 3rd DR now that has told me something more then fibro but back 2 yrs ago my sx were so mild but have gotten so bad i am registered disabled,this is not norm for fibro i've only been dx a tear and abit.
Hoping the neuro will see something this time and something will show so i can start treatment and slow this down.
good luck
sam
i had the same experience my ENT said my vertigo was central and could not believe this was all down to fibro and had to be something else he was shocked that i had MRI done without contrast and ordered one done of the brain with contrast but he said i cant dx you but at least one will be ready for him,its a 5-6 week wait for that it's different here in the UK we dont get to choice who we see we can chose the hospital but this has only happened in the last few yrs,i told him i was waiting to see another neuro (still waiting) so i hope they will do proper test this time this is the 3rd DR now that has told me something more then fibro but back 2 yrs ago my sx were so mild but have gotten so bad i am registered disabled,this is not norm for fibro i've only been dx a tear and abit.
Hoping the neuro will see something this time and something will show so i can start treatment and slow this down.
good luck
sam
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