Aa
New doc says No Brain Infection
Hey, everyone!
I feel like I'm back to the drawing board again. I went to an MS specialist today, to see what he thought about my last diagnosis of "a brain infection which lead to my developing growth hormone deficiency." This new guy said, "No way. Your exam looks too good for you to have had a brain infection. Put that out of your head." OY!
To make a very long story short, he took my history, gave me a pretty darned good exam, and ordered the results from my last doctors, and ordered a few new tests. I'm not sure what it all means.
He ordered blood work: ESR, ANCA, ANA, Biz (?), folate, and CPK.
The tests he has ordered are: EEG, ENG, AEP, and SSEP(upper).
The diagnoses he wrote on my insurance bill were: vertigo, (I think "aphasia" which I had with my first complicated migrine episodes), and cervical myelopathy.
I did have cervical fusions done a few years ago. Does he think this is related to my arthritis? Would that be a reason to order the evoked potentials? Arthritis? OY!
If anyone has anything to insert here to help me make sense of the tests and Dxs, I'd sure appreciate it. Back in Limboland, that old familiar haunt!
Hugs,
Zilla*
I feel like I'm back to the drawing board again. I went to an MS specialist today, to see what he thought about my last diagnosis of "a brain infection which lead to my developing growth hormone deficiency." This new guy said, "No way. Your exam looks too good for you to have had a brain infection. Put that out of your head." OY!
To make a very long story short, he took my history, gave me a pretty darned good exam, and ordered the results from my last doctors, and ordered a few new tests. I'm not sure what it all means.
He ordered blood work: ESR, ANCA, ANA, Biz (?), folate, and CPK.
The tests he has ordered are: EEG, ENG, AEP, and SSEP(upper).
The diagnoses he wrote on my insurance bill were: vertigo, (I think "aphasia" which I had with my first complicated migrine episodes), and cervical myelopathy.
I did have cervical fusions done a few years ago. Does he think this is related to my arthritis? Would that be a reason to order the evoked potentials? Arthritis? OY!
If anyone has anything to insert here to help me make sense of the tests and Dxs, I'd sure appreciate it. Back in Limboland, that old familiar haunt!
Hugs,
Zilla*
Hi, Q! Glad you're back!
Yes, I was wondering that,too! I only mentioned sensory problems in the legs, not arms. I didn't know that the SSEP worked that way. Maybe it's from the pinprick test. I had hardly any sensation in my ribcage area. That's been true when others have tested, as well. BUT, I also had hardly any sensation on top od my feet and ankles, so I don't know why he's only doing the lower.
How should I ask about this?
Z*
Yes, I was wondering that,too! I only mentioned sensory problems in the legs, not arms. I didn't know that the SSEP worked that way. Maybe it's from the pinprick test. I had hardly any sensation in my ribcage area. That's been true when others have tested, as well. BUT, I also had hardly any sensation on top od my feet and ankles, so I don't know why he's only doing the lower.
How should I ask about this?
Z*
Hi, Guys, I think I'm back among the moving.
"Zilla - I was wondering about why the no lower SSEP, but do you have any sensory problems in the legs. If it is all motor, the SSEP would't test for it.
Hi, Essie - You always have such a great "voice" for people. Y'all are so great!
Quix
"Zilla - I was wondering about why the no lower SSEP, but do you have any sensory problems in the legs. If it is all motor, the SSEP would't test for it.
Hi, Essie - You always have such a great "voice" for people. Y'all are so great!
Quix
WHEN I HAD SOME MY FIRST ORIGINAL TEST DONE THEY WERE NORMAL, NOW THEY HAVE BECOME ABNORMAL OVER TIME.
MY VEP IN APRIL 2006 WAS NORMAL---VEP IN DEC. 2007 ABNORMAL BOTH EYES.
HEARING TEST --THE HEARING OCT.2006 SENSORINEURAL LOSS ---MILD
THE HEARING DEC.2007 SENSORINEURAL LOSS--MODERATE
SSEP---APRIL 2006 NORMAL---SSEP IN DEC. ABNORMAL
I THINK THAT SYMPTOMS LIKE TO TOY WITH US BEFORE THE REAL ETOLOGY COMES THROUGH.
I CAN SIT BACK AND THINK 14 YEARS AGO THAT I HAD MS SYMPTOMS OCCURRING AND NEVER PUT THEM TO ANYTHING OTHER THAN FATIGUE FROM WORKING AND RAISING THE KIDS,
HOPEFULLY THESE TEST WILL GIVE YOUR NEURO SOME INSIGHT ON WHAT MAYBE OCCURRING.
T
MY VEP IN APRIL 2006 WAS NORMAL---VEP IN DEC. 2007 ABNORMAL BOTH EYES.
HEARING TEST --THE HEARING OCT.2006 SENSORINEURAL LOSS ---MILD
THE HEARING DEC.2007 SENSORINEURAL LOSS--MODERATE
SSEP---APRIL 2006 NORMAL---SSEP IN DEC. ABNORMAL
I THINK THAT SYMPTOMS LIKE TO TOY WITH US BEFORE THE REAL ETOLOGY COMES THROUGH.
I CAN SIT BACK AND THINK 14 YEARS AGO THAT I HAD MS SYMPTOMS OCCURRING AND NEVER PUT THEM TO ANYTHING OTHER THAN FATIGUE FROM WORKING AND RAISING THE KIDS,
HOPEFULLY THESE TEST WILL GIVE YOUR NEURO SOME INSIGHT ON WHAT MAYBE OCCURRING.
T
HEY, T~
I'M GLAD ONE OF YOUR TESTS CAME OUT NORMAL!
I WONDER WHAT HE'S UP TO, THOUGH... HE'S ONLYDOING AN UPPER SSEP. I DON'T GET IT. MY SYMPTOMS HAVE MOSTLY BEEN IN MY LEGS, ALTHOUGH I THINK WHEN HE EXAMINED ME, MY LEGS WERE FINE AND MY ARMS WERE A LITTLE WEAK.
I SUPPOSE HE'S DOING THE AEP BECAUSE OF MY HEARING LOSS (I WEAR HEARING AIDS, TOO, LIKE YOU) AND MAYBE BECAUSE OF MY HISTORY OF VERTIGO AND MY PRESENT DIZZINESS....
I WISH HE WAS AT LEAST THINKING MS.
THANKS FOR THE GOOD WISHES! RIGHT BACK AT YA!
ZILLA*
I'M GLAD ONE OF YOUR TESTS CAME OUT NORMAL!
I WONDER WHAT HE'S UP TO, THOUGH... HE'S ONLYDOING AN UPPER SSEP. I DON'T GET IT. MY SYMPTOMS HAVE MOSTLY BEEN IN MY LEGS, ALTHOUGH I THINK WHEN HE EXAMINED ME, MY LEGS WERE FINE AND MY ARMS WERE A LITTLE WEAK.
I SUPPOSE HE'S DOING THE AEP BECAUSE OF MY HEARING LOSS (I WEAR HEARING AIDS, TOO, LIKE YOU) AND MAYBE BECAUSE OF MY HISTORY OF VERTIGO AND MY PRESENT DIZZINESS....
I WISH HE WAS AT LEAST THINKING MS.
THANKS FOR THE GOOD WISHES! RIGHT BACK AT YA!
ZILLA*
HEY, T~
I'M GLAD ONE OF YOUR TESTS CAME OUT NORMAL!
I WONDER WHAT HE'S UP TO, THOUGH... HE'S ONLYDOING AN UPPER SSEP. I DON'T GET IT. MY SYMPTOMS HAVE MOSTLY BEEN IN MY LEGS, ALTHOUGH I THINK WHEN HE EXAMINED ME, MY LEGS WERE FINE AND MY ARMS WERE A LITTLE WEAK.
I SUPPOSE HE'S DOING THE AEP BECAUSE OF MY HEARING LOSS (I WEAR HEARING AIDS, TOO, LIKE YOU) AND MAYBE BECAUSE OF MY HISTORY OF VERTIGO AND MY PRESENT DIZZINESS....
I WISH HE WAS AT LEAST THINKING MS.
THANKS FOR THE GOOD WISHES! RIGHT BACK AT YA!
ZILLA*
I'M GLAD ONE OF YOUR TESTS CAME OUT NORMAL!
I WONDER WHAT HE'S UP TO, THOUGH... HE'S ONLYDOING AN UPPER SSEP. I DON'T GET IT. MY SYMPTOMS HAVE MOSTLY BEEN IN MY LEGS, ALTHOUGH I THINK WHEN HE EXAMINED ME, MY LEGS WERE FINE AND MY ARMS WERE A LITTLE WEAK.
I SUPPOSE HE'S DOING THE AEP BECAUSE OF MY HEARING LOSS (I WEAR HEARING AIDS, TOO, LIKE YOU) AND MAYBE BECAUSE OF MY HISTORY OF VERTIGO AND MY PRESENT DIZZINESS....
I WISH HE WAS AT LEAST THINKING MS.
THANKS FOR THE GOOD WISHES! RIGHT BACK AT YA!
ZILLA*
YA KNOW WIITH ALL THE TEST A VEP THROWN IN THERE WOULDN'T BE A BAD IDEA. SAME ROOM AND SO FORTH.
WHEN I HAD MY EEG THE DANG THING WAS SLEEP DEPRIVED,GUESS THE DEAR OLD DOC WAS CHECKING FOR SEIZURES.IT WAS NORMAL!!!!!
BEST OF LUCK WITH THE TESTS ,WITH ALL THE EVOKED POTENTIALS I HATED THE SSEP THE MOST!!!
T
WHEN I HAD MY EEG THE DANG THING WAS SLEEP DEPRIVED,GUESS THE DEAR OLD DOC WAS CHECKING FOR SEIZURES.IT WAS NORMAL!!!!!
BEST OF LUCK WITH THE TESTS ,WITH ALL THE EVOKED POTENTIALS I HATED THE SSEP THE MOST!!!
T
Thanks for your input. I really should be more like you. I admire the way you speak up for yourself. I don't know why it's so hard for me. I think I don't want the doc to think I am insisting I have MS. Know what I mean?
I have thought that I would check when I am there for my tests and see if he wanted me to have a VEP, and if he didn't, I would ask 'why not?' I'm afraid that's about as bold as I could dare to be....
Send me some chutzpah!
Z*
I have thought that I would check when I am there for my tests and see if he wanted me to have a VEP, and if he didn't, I would ask 'why not?' I'm afraid that's about as bold as I could dare to be....
Send me some chutzpah!
Z*
Hey there Zilla. You indeed have been wonderful about greeting newbies when others are ot up to it (and always). Where do you get the time?
I'm awfully sorry things remain wretched with you personally. One suggestion, though: Can you just ASK for the VEP test? Your doctor, I mean? It's done by the same person in the same room with similar techniques, so it's far from a stretch. If you doc wants to know why, just say a friend with MS is urging you to ask. (That covers a lot of people.) Go ahead and be a little pushy. All of us here have had to do that.
ess
I'm awfully sorry things remain wretched with you personally. One suggestion, though: Can you just ASK for the VEP test? Your doctor, I mean? It's done by the same person in the same room with similar techniques, so it's far from a stretch. If you doc wants to know why, just say a friend with MS is urging you to ask. (That covers a lot of people.) Go ahead and be a little pushy. All of us here have had to do that.
ess
Hey, you guys! Thanks for responding! It really touches my heart. You know I generally like to respond with a note individually to each one of you, but I'm trying to keep up with the Newbies while Heather and Quix are out. It kills me not to respond to each one of you!
Thanks for writing! I did tell my husband I went to see this guy. He's out of town right now. He's SO busy, getting very little sleep. He seemed sad that the diagnosis is back to square one, but we'll talk more when he gets home, and he wants me to continue the hormone for now, until we figure things out (even though it's SOOOO expensive). The neuro wants me to ask my internist about it, whom he knows and respects. We'll probably follow his advice.
Yes, the testing looks promising. The eeg was NOT sleep-deprived. I did it the day of my apointment, as they had an opening that morning. I have had abnormal ones before. And normal ones! I am not sure where this guy is going. He ordered evoked potentials, but NOT a VEP, which makes Quix think he's not looking for MS. (Do you guys know I've never had evoked potentials done before now?) But he's looking for something....
Thanks again! It's great to be back to the vast abyss we love to call Limboland. The dark side of the moon. It's crowded, it's wacky, and it's home again for now. Everyone knows me here, and I speaks the language! Don't worry, Penn, I can sit on the floor!
Love ya all!
Zilla*
Thanks for writing! I did tell my husband I went to see this guy. He's out of town right now. He's SO busy, getting very little sleep. He seemed sad that the diagnosis is back to square one, but we'll talk more when he gets home, and he wants me to continue the hormone for now, until we figure things out (even though it's SOOOO expensive). The neuro wants me to ask my internist about it, whom he knows and respects. We'll probably follow his advice.
Yes, the testing looks promising. The eeg was NOT sleep-deprived. I did it the day of my apointment, as they had an opening that morning. I have had abnormal ones before. And normal ones! I am not sure where this guy is going. He ordered evoked potentials, but NOT a VEP, which makes Quix think he's not looking for MS. (Do you guys know I've never had evoked potentials done before now?) But he's looking for something....
Thanks again! It's great to be back to the vast abyss we love to call Limboland. The dark side of the moon. It's crowded, it's wacky, and it's home again for now. Everyone knows me here, and I speaks the language! Don't worry, Penn, I can sit on the floor!
Love ya all!
Zilla*
Welcome back to Limboland! Missed ya! Grab some chains and get to rattling around your old haunt again - I'm sure I have some extras around here somewhere...gimme a sec to look around...I know I left them rightover there, darnit...
Hang in there
Penn
Hang in there
Penn
BOY I MISS ALOT AFER BEING AT THE ER TWO NIGHTS IN A ROW.
SORRY YOU ARE GOING THROUGH ALL THESE TEST.
SOME I TAKE IT HAVE ALREADY HAD.
THE ENG HOPEFULLY THEY'LL HAVE THE UPDATED MACHINE THE VNG,THAT TEST PICKED UP ON THE INO A FORM OF NYSTAGMUS ASSOCIATED WITH MS AND IT DETECTED LESIONS NEAR THE BRAIN STEM AND THE LEFT SIDE OF MY BRAIN(EXPLAINS THE RIGHT SIDE SYMPTOMS)
MY FIRST VEP WAS NORMAL,APRIL 2006,COME DEC.2007 BILATERIAL ON.
THINGS CAN CHANGE JUST LIKE THAT.
THIS DR SEEMED TO BE VERY THOROUGH ON TESTING.
HOPE THIS DR STICKS IT OUT AND GETS YOU OUT OF LIMBO.
WHEN DO YOU HAVE THE REST OF THE TEST?IS THE EEG SLEEP DEPRIVED?
T
SORRY YOU ARE GOING THROUGH ALL THESE TEST.
SOME I TAKE IT HAVE ALREADY HAD.
THE ENG HOPEFULLY THEY'LL HAVE THE UPDATED MACHINE THE VNG,THAT TEST PICKED UP ON THE INO A FORM OF NYSTAGMUS ASSOCIATED WITH MS AND IT DETECTED LESIONS NEAR THE BRAIN STEM AND THE LEFT SIDE OF MY BRAIN(EXPLAINS THE RIGHT SIDE SYMPTOMS)
MY FIRST VEP WAS NORMAL,APRIL 2006,COME DEC.2007 BILATERIAL ON.
THINGS CAN CHANGE JUST LIKE THAT.
THIS DR SEEMED TO BE VERY THOROUGH ON TESTING.
HOPE THIS DR STICKS IT OUT AND GETS YOU OUT OF LIMBO.
WHEN DO YOU HAVE THE REST OF THE TEST?IS THE EEG SLEEP DEPRIVED?
T
Hi, Zilla.
Afraid I am in the dark about the tests, but I join you in large part in LimboLand. Seems like there are too many of us here. (: What I hate, is that none of the doctors can agree on a dx.
Hugs,
Sheila
Afraid I am in the dark about the tests, but I join you in large part in LimboLand. Seems like there are too many of us here. (: What I hate, is that none of the doctors can agree on a dx.
Hugs,
Sheila
i had the damn eap vep and just about all the ones ending in p...lol
the aep is wires attached to your head and they send this signal kind of like your being hit with a stun gun from your say hand to brain to check for that mylen stuff... u can goole the actual test and will give you some great insight... inlike me... im doing good if i even remember half the test's i had.... lmfao
ttyl
hang tight
the aep is wires attached to your head and they send this signal kind of like your being hit with a stun gun from your say hand to brain to check for that mylen stuff... u can goole the actual test and will give you some great insight... inlike me... im doing good if i even remember half the test's i had.... lmfao
ttyl
hang tight
You knew you couldn't escape the wonderful world of Limboland! I am glad to see you posting I missed you lots.
Good luck with your tests, you'll be in my thoughts and prayers.
((((hugs))))
doni
Good luck with your tests, you'll be in my thoughts and prayers.
((((hugs))))
doni
Hi there!
It sounds like he is interested in your case and hopefully will continue to finish the MS dx rule out protocol. I am praying that these tests start to lead you in the right direction! Did you tell hubby? What did the doc say about the GH deficiency?
In the meantime, welcome back to Limboland!! We missed your great sense of humor!!
Love ya!
Kristin
It sounds like he is interested in your case and hopefully will continue to finish the MS dx rule out protocol. I am praying that these tests start to lead you in the right direction! Did you tell hubby? What did the doc say about the GH deficiency?
In the meantime, welcome back to Limboland!! We missed your great sense of humor!!
Love ya!
Kristin
Hey Honey,
Welcome back to Limbo Land. Come on admit it, you were missing being part of the great nothing and undiagnosed.
Sounds like you have a great new doctor. You may not be here for long....
Hang in there.
Love
Sally
Welcome back to Limbo Land. Come on admit it, you were missing being part of the great nothing and undiagnosed.
Sounds like you have a great new doctor. You may not be here for long....
Hang in there.
Love
Sally
DITTO!!!!! i will send you an email in the am filling you in on my appt w/neuro today...... im exhausted
TTYL
Cheryl
TTYL
Cheryl
I wish I had the energy to be cute and funny like the others, but for now I will just say keep on keepin' on. I really hope we can get down to business with your stuff. Love to you, Amy
Awww gal - you just pull up your chair and start haunting. Hey, we even have our own native tongue now - its called Hypogammish. :))
I do like the way your new doctor sounds. Mmm he might be a keeper! And a sweater too, rock on!
LOL at the Biz :))
The Fizz
I do like the way your new doctor sounds. Mmm he might be a keeper! And a sweater too, rock on!
LOL at the Biz :))
The Fizz
The CPK is for a muscle enzyme, creatinine kinase. He is looking for a muscle inflammation or disease, like a myopathy.
Myelopathy is disease of the spinal cord. I think it usually refers to disc disease, but I noticed that Quix said that her spinal myelopathy is worsening. So I guess it could mean any type of disease of the spinal cord.
Elaine
Myelopathy is disease of the spinal cord. I think it usually refers to disc disease, but I noticed that Quix said that her spinal myelopathy is worsening. So I guess it could mean any type of disease of the spinal cord.
Elaine
ANA- I just had this test done- its to do with lupus and auto immunne stuff.
Good luck with your results. It sounds like he is on the ball.
Good luck with your results. It sounds like he is on the ball.
I don't know what happened to my last post! OY! Out in cyberspace....
Thanks, you guys for responding!
Rena ~ Which of my two chins do you want me to keep up? ; ) You crack me up!
SL ~ Thanks for the info and site! I'll check out the Biz thing.. think I got the name wrong...
Yes, I liked the doc. He wore a sweater, not a white coat, which I thought made him very approachable. He's older, but, very quick! He seemed to hurry me through the questions a bit, but did listen well. Wrote every single odd thing down and repeated it back to make sure it was right.
He peeked into the room I was having my blood drawn in, and he was so fast, he startled me! He kept popping in to ask a few more questions, probably while he was dictating, or teaching the student he had with him. He's quick!
LA ~ Yes, Limboland is no place for sissies! It's a good thing I know my way around here and still have lots of friends like you, or I'd be lost.... We'll have to hang onto each other and keep the faith a bit longer. Give that delicious baby a cuddlefor us!
Take care!
Zilla*
Thanks, you guys for responding!
Rena ~ Which of my two chins do you want me to keep up? ; ) You crack me up!
SL ~ Thanks for the info and site! I'll check out the Biz thing.. think I got the name wrong...
Yes, I liked the doc. He wore a sweater, not a white coat, which I thought made him very approachable. He's older, but, very quick! He seemed to hurry me through the questions a bit, but did listen well. Wrote every single odd thing down and repeated it back to make sure it was right.
He peeked into the room I was having my blood drawn in, and he was so fast, he startled me! He kept popping in to ask a few more questions, probably while he was dictating, or teaching the student he had with him. He's quick!
LA ~ Yes, Limboland is no place for sissies! It's a good thing I know my way around here and still have lots of friends like you, or I'd be lost.... We'll have to hang onto each other and keep the faith a bit longer. Give that delicious baby a cuddlefor us!
Take care!
Zilla*
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