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Epic Visit with Neurologist
Just back from my first-ever five-hour-long doctor's appointment. A nurse practitioner saw me first and spent over an hour taking down my symptom history and asking questions, and then she did the routine observational test stuff. Then the doctor came in and did some of it over again, and then he looked at my MRI CDs. He said that my symptoms are "worrisome" and would suggest multiple sclerosis, but MRIs have been done and don't show evidence. He said he's never had a patient with MS who had a completely normal MRI. He said the only "worrisome" (he likes that word, I guess) thing he observed is a very quick knee-jerk reflex, and he said that some people are just born with quick knee reflexes, but it's a concern. He also said that he thought the nerve in my right eye looked "blurry" and wrote me a referral to a neuroopthamologist who would know for sure if it's unusual. He ordered another series of EMGs (nooooooooooooooooooooooo), as well as visual and auditory tests, so I blocked three days in a row for neuro testing. If all that comes back normal, he said, then he'll probably send me to Johns Hopkins for a skin biopsy (to look at surface nerves) and a second opinion.
This place took SO much time with me and both the NP and the doctor explained everything (though the nurse was a better listener than the doc) along the way. The doctor said that a lot of younger neurologists give the tests and if they come back normal, they tell the patient to be happy, and if the patient isn't satisfied with no answer, the doctors say the patient is crazy and tell them to see a psychiatrist. He said he and his colleagues give his patients the same treatment they would give to their own family.
Just an update.
This place took SO much time with me and both the NP and the doctor explained everything (though the nurse was a better listener than the doc) along the way. The doctor said that a lot of younger neurologists give the tests and if they come back normal, they tell the patient to be happy, and if the patient isn't satisfied with no answer, the doctors say the patient is crazy and tell them to see a psychiatrist. He said he and his colleagues give his patients the same treatment they would give to their own family.
Just an update.
Hey big guy, sorry I haven't been on the forum in the last few days. Pretty good news finding a competent neuro. I know you are frustrated about the slow pace of this but it's priceless to have a great neuro in your corner. Answers come from it.
I am loving the back and forth of this thread. Looks like you are well attended to. Keep up the good fight!
Julie
I am loving the back and forth of this thread. Looks like you are well attended to. Keep up the good fight!
Julie
Grannyhotwheels- LOL,,,,, I am actually in the process of looking for a new neuro. I wish this forum can be considered a secondary Doc. because the knowledge, compassion and concern we all need in a doc, is all right here!! You are so sweet. :)
Artistlike - I love when they ask that question, which is the worst symptom,,,, I Don't Know, each one is different and effects you in whatever you are attempting to do at any given time of the Blessed day. I have had trouble writing, I was going for my SSD review and my mom had to finish filling out the paperwork for me because the tremor was "CRAZY". I don't drive because of my vision.
I am actually right now waiting to hear from 3 of my Doc.'s regarding the NIH. I hope I can get in there. I just need answers and I am at this point willing to spend a week in the hosp. to get them. I know that sounds nuts, but I have two small children and I need to be here for them with some functioning before its too late.
Once again, very happy for you!!!
Pam
Artistlike - I love when they ask that question, which is the worst symptom,,,, I Don't Know, each one is different and effects you in whatever you are attempting to do at any given time of the Blessed day. I have had trouble writing, I was going for my SSD review and my mom had to finish filling out the paperwork for me because the tremor was "CRAZY". I don't drive because of my vision.
I am actually right now waiting to hear from 3 of my Doc.'s regarding the NIH. I hope I can get in there. I just need answers and I am at this point willing to spend a week in the hosp. to get them. I know that sounds nuts, but I have two small children and I need to be here for them with some functioning before its too late.
Once again, very happy for you!!!
Pam
Lesions in the spine are notoriously difficult to spot. I would think that a stronger MRI machine looking for lesions, the better. Someone can correct me if I'm wrong, but this is what I've learned from years on the forum. I hit the MS jackpot with my brain MRI to begin with and have never had a T-spine MRI. BTW, my C-spine MRI is showing problems with disc issues, though.
C-reative protein & sed rate shows inflammation
HLA-B27 is a gene that is associated with sero-negative forms of arthritis like ankylosing spondilitis, Rieter's syndrome, ulcerative colitis, etc.
Many forms of arthritis are associated with neurological symptoms (especially if the spine or CNS is involved), eye problems, internal organ problems, etc. etc. Have you been to a rheumatologist?
Another thought is if you've been to an audiologist or an ENT. I remember you saying something about hearing issues. I have hearing loss that was determined to be sensori-neural.
As far as the vision goes, there are other issues that cause vision problems besides ON like uveitis. This can cause blurring of vision, too. It is also associated with other diseases. Just FYI in case the VEP turns out to be normal. I can't stress enough to have a really, really good ophthalmologist. My sister, who also has MS, has lots of severe vision issues. She can't see very well at all, but her doctor says it's migraines (which I think is a crock of you-know-what). I've had ON twice and thankfully I have great eye doctor who knows what he's doing.
C-reative protein & sed rate shows inflammation
HLA-B27 is a gene that is associated with sero-negative forms of arthritis like ankylosing spondilitis, Rieter's syndrome, ulcerative colitis, etc.
Many forms of arthritis are associated with neurological symptoms (especially if the spine or CNS is involved), eye problems, internal organ problems, etc. etc. Have you been to a rheumatologist?
Another thought is if you've been to an audiologist or an ENT. I remember you saying something about hearing issues. I have hearing loss that was determined to be sensori-neural.
As far as the vision goes, there are other issues that cause vision problems besides ON like uveitis. This can cause blurring of vision, too. It is also associated with other diseases. Just FYI in case the VEP turns out to be normal. I can't stress enough to have a really, really good ophthalmologist. My sister, who also has MS, has lots of severe vision issues. She can't see very well at all, but her doctor says it's migraines (which I think is a crock of you-know-what). I've had ON twice and thankfully I have great eye doctor who knows what he's doing.
C-reactive protein: Don't think so?
sed rate: Don't think so?
LP: No
T-spine MRI (3T or greater): Yes, 1.5T only
VEP: In two weeks; not yet.
HLA-B27: ???
B12 levels: Yes, normal
TSH: Yes, all normal
RF: : Don't think so?
My first C-spine report said I have small disc bulges in two areas as well as an ovoid-shaped bright spot visible only on the axial view of C2-C3 in only one series. They rescanned the cervical area and the follow-up report said it's normal. The neurologist looked at both MRIs yesterday and said the first one was just terrible quality and that the report should have stated that and not made any kind of determination based on the images, and he said as far as he can tell, he cervical spine looks completely normal in the second set, but he'll have his radiology department look at it.
sed rate: Don't think so?
LP: No
T-spine MRI (3T or greater): Yes, 1.5T only
VEP: In two weeks; not yet.
HLA-B27: ???
B12 levels: Yes, normal
TSH: Yes, all normal
RF: : Don't think so?
My first C-spine report said I have small disc bulges in two areas as well as an ovoid-shaped bright spot visible only on the axial view of C2-C3 in only one series. They rescanned the cervical area and the follow-up report said it's normal. The neurologist looked at both MRIs yesterday and said the first one was just terrible quality and that the report should have stated that and not made any kind of determination based on the images, and he said as far as he can tell, he cervical spine looks completely normal in the second set, but he'll have his radiology department look at it.
Have you had the following tests?
C-reactive protein
sed rate
LP
T-spine MRI (3T or greater)
VEP
HLA-B27
B12 levels
TSH
RF
I thought your 1st C-spine revealed some degenerative disc changes--my memory is blinky, though. This could cause some numbness in your fingers. This doesn't explain everything, but could give a clue. Maybe I'm wrong, but you're too young to have changes in your c-spine like this (unless you have an injury).
C-reactive protein
sed rate
LP
T-spine MRI (3T or greater)
VEP
HLA-B27
B12 levels
TSH
RF
I thought your 1st C-spine revealed some degenerative disc changes--my memory is blinky, though. This could cause some numbness in your fingers. This doesn't explain everything, but could give a clue. Maybe I'm wrong, but you're too young to have changes in your c-spine like this (unless you have an injury).
I don't think I even have "possible" MS at this point. So far, all the tests have been normal except my knee-jerk reflexes and possibly my right optic nerve, but I need to get that looked at by the NO. I assume that one would need some kind of partial indicator of MS--a visible lesion or two, positive spinal tap results, etc.--to be qualify for the NIH trial? I've only landed here because all my symptoms seem just like MS and this has turned out to be such a wonderful, supportive community of people that regardless of what's wrong with me, it's the best place for me to share info with other people in similar situations.
I would do the skin biopsy if he asked me to and if I could afford it. He said it would be the last test he'd order after everything else (EMG, EEG, etc.). He said he wouldn't order a lumbar puncture because if all the other tests were negative and a spinal tap were positive, no one would know what to do with that information.
I would do the skin biopsy if he asked me to and if I could afford it. He said it would be the last test he'd order after everything else (EMG, EEG, etc.). He said he wouldn't order a lumbar puncture because if all the other tests were negative and a spinal tap were positive, no one would know what to do with that information.
Oh, not a nerve biopsy then...I really misunderstood my neuro. That does sound more like what he was telling me. Thanks for the clarification. Woudl you do it if he refers you? Insurance companies are getting really tight on testing these days, but I think it might be worthwhile.
Thanks for sharing the docs name. WHC has an excellent reputation. My neuro is at GW, which is also pretty good.
Are you aware that NIH has a clinical study for people with "possible" MS? I have a few friends who have gone up there for this particular study and I am also a patient there.
Thanks for sharing the docs name. WHC has an excellent reputation. My neuro is at GW, which is also pretty good.
Are you aware that NIH has a clinical study for people with "possible" MS? I have a few friends who have gone up there for this particular study and I am also a patient there.
I don't mind at all. It's Dr. Michael Batipps (and Nurse Practitioner Carter) at Washington Hospital Center. My insurance referred me to his partner, Dr. Joseph Liberman, but the office scheduled me to see Dr. Batipps, who was really wonderful. I'm just hoping they'll pay for the visit.
I'm pretty sure he wasn't talking about that clinical trial. He said a skin biopsy isn't that painful--they just take small samples of skin from a few places--but that nerve biopsies aren't fun because they have to kill a nerve (and therefore cause permanent numbness) to do the biopsy. He said he hasn't ordered a nerve biopsy since the 1970s.
I'm pretty sure he wasn't talking about that clinical trial. He said a skin biopsy isn't that painful--they just take small samples of skin from a few places--but that nerve biopsies aren't fun because they have to kill a nerve (and therefore cause permanent numbness) to do the biopsy. He said he hasn't ordered a nerve biopsy since the 1970s.
I'd like to know about that clinical trial as well.
As far as I know, skin biopsies to identify small fiber neuropathy are not new. I supposedly have this problem in my feet and lower legs, but my neuro merely deduced that from my muted reaction to p rick tests. I really doubt this, but I have no trouble from it and am diagnosed with MS anyway. It's true that EMG/NCS will not pick up this problem.
ess
As far as I know, skin biopsies to identify small fiber neuropathy are not new. I supposedly have this problem in my feet and lower legs, but my neuro merely deduced that from my muted reaction to p rick tests. I really doubt this, but I have no trouble from it and am diagnosed with MS anyway. It's true that EMG/NCS will not pick up this problem.
ess
That is an amazing experience. If you don't mind sharing, who are you seeing in the DC area? It is so hard to find a good neuro in this area and that he is taking your symptoms seriously.
It sounds like the doctor is talking about the clinical trial they are doing at Hopkins for small nerve biopsy. My neuro told me about it as well. They are finding nerve issues in this type of testing that is not showing up on the EMGs. It would be interesting to hear how it goes if your doctor refers you over there.
Julie
It sounds like the doctor is talking about the clinical trial they are doing at Hopkins for small nerve biopsy. My neuro told me about it as well. They are finding nerve issues in this type of testing that is not showing up on the EMGs. It would be interesting to hear how it goes if your doctor refers you over there.
Julie
And yes, Pam, your doctor sounds terrible. Even if your tests were all totally normal, he shouldn't disrespect and dismiss you that way.
Thanks, everyone. Yes, I feel like I finally found a doctor who is going to at least give me the respect of believing that I'm experiencing what I am experiencing.
And it's thanks to this site and many of you who have encouraged me to "be your own best advocate." My doctor didn't understand why I wanted a C-spine MRI, but she prescribed it anyway. And then I actually ordered my own blood tests for Lyme and ANA. Yesterday, the doctor said he'd ordinarily be very, very concerned because of my symptoms and that he'd run all the tests, but that he's somewhat reassured that I don't have anything really terrible because my doctor already had the MRIs and the blood tests done for B12, Lyme, and lupus (ANA test). I know doctors don't generally like people who read too much about possible conditions, but it's because I did that I have made this much progress, as little as it may be. I'm scared to death to have the freaking EMG test again (wahhhhhhhhhhh), but I'll do whatever I need to do.
And Pam, interestingly (annoyingly), the tremors in my fingers have been really severe for a couple of weeks, interfering with my writing and making it pretty much impossible for me to read on my Kindle last week (because my thumbs kept clicking buttons randomly)--but neither the NP nor the neurologist seemed at all interested in the fact that my hands are so twitchy. My mother has essential tremors and takes Propranolol for her tremors, so I'd think they'd at least have asked about it or noted it, but maybe my other symptoms are just overshadowing the tremors? I don't know. They kept asking what the "worst" symptoms are, and that's so hard to answer. At work, the inability to concentrate is the worst. At home, it's being exhausted. When I'm walking, it's usually the tingling/pain in my feet and left leg coordination. And when I'm driving, it's vision. But they wanted me to pick one.
This whole process is kind of fascinating in a way. I have an MFA in fiction writing, and really the only thing that's good for, practically speaking, is translating annoying things people say and do into "well, that would be interesting as a character in a story." If I could concentrate for more than a few minutes, I might try to write something...
And it's thanks to this site and many of you who have encouraged me to "be your own best advocate." My doctor didn't understand why I wanted a C-spine MRI, but she prescribed it anyway. And then I actually ordered my own blood tests for Lyme and ANA. Yesterday, the doctor said he'd ordinarily be very, very concerned because of my symptoms and that he'd run all the tests, but that he's somewhat reassured that I don't have anything really terrible because my doctor already had the MRIs and the blood tests done for B12, Lyme, and lupus (ANA test). I know doctors don't generally like people who read too much about possible conditions, but it's because I did that I have made this much progress, as little as it may be. I'm scared to death to have the freaking EMG test again (wahhhhhhhhhhh), but I'll do whatever I need to do.
And Pam, interestingly (annoyingly), the tremors in my fingers have been really severe for a couple of weeks, interfering with my writing and making it pretty much impossible for me to read on my Kindle last week (because my thumbs kept clicking buttons randomly)--but neither the NP nor the neurologist seemed at all interested in the fact that my hands are so twitchy. My mother has essential tremors and takes Propranolol for her tremors, so I'd think they'd at least have asked about it or noted it, but maybe my other symptoms are just overshadowing the tremors? I don't know. They kept asking what the "worst" symptoms are, and that's so hard to answer. At work, the inability to concentrate is the worst. At home, it's being exhausted. When I'm walking, it's usually the tingling/pain in my feet and left leg coordination. And when I'm driving, it's vision. But they wanted me to pick one.
This whole process is kind of fascinating in a way. I have an MFA in fiction writing, and really the only thing that's good for, practically speaking, is translating annoying things people say and do into "well, that would be interesting as a character in a story." If I could concentrate for more than a few minutes, I might try to write something...
This message is for Pam::: I just read your post and honey I think it's time to change doctors... He for sure sounds like a quack!!! All of those test and symptoms is not anxiety... I'm no doctor but by his standards I could be one... Please don't go back to him...
I'll be praying,
Carol
I'll be praying,
Carol
I am so very happy you found a wonderful doctor..they are hard to find..you are blessed :) Maybe they will finally get to the bottom of everything and you will have some answers!
I agree with HoustonDogLove,,,,,, it is awesome and I am very jealous.
I want to change my neuro. because his exams, (if that's what he calls it) lasts less than 10 mins.
I have hyperreflexia, nystagmus, optic neuropathy , left hand tremor, double vision. I tip over when I close my left eye, I have had slurred speech that lasted up to two weeks and he says seizure disorder. My clinical signs are there, my VEP abnormal, EEG abnormal, but he still tells me its anxiety and rushes me out the door.
"If it looks like a duck and quacks like a duck, IT'S A DUCK!!!! He's a Duck, QUACK , QUACK!! lol
Sorry about all that, he just irritates me. LOL
I am very happy for you that you have a dr. that is LISTENING TO YOU!
Good luck to you,
Pam
I want to change my neuro. because his exams, (if that's what he calls it) lasts less than 10 mins.
I have hyperreflexia, nystagmus, optic neuropathy , left hand tremor, double vision. I tip over when I close my left eye, I have had slurred speech that lasted up to two weeks and he says seizure disorder. My clinical signs are there, my VEP abnormal, EEG abnormal, but he still tells me its anxiety and rushes me out the door.
"If it looks like a duck and quacks like a duck, IT'S A DUCK!!!! He's a Duck, QUACK , QUACK!! lol
Sorry about all that, he just irritates me. LOL
I am very happy for you that you have a dr. that is LISTENING TO YOU!
Good luck to you,
Pam
Thant sounds awesome ! I know a lot of people here that would be jealous. Some times I wait for an hour but it's worth the wait, I love my neuro too.
Good luck
Good luck
This is what I consider a good doctor. Looking at everything and listening to patient. My first neuro appt was about 15 minutes and no exam. Last one less than 2 minutes. It sounds like you have found a doctor who wants to find route of your problems. Hope you feel well soon!!
That is awesome news! I am glad someone is listening, taking the time to explain things to you and is thorough. I'd LOVE that. :) One point for you. LOL
He sounds like a very good doctor to me... The last Neuro I went to was like that too... He spent about 3 hours with me and we just really clicked... I also like the fact that depending on the results of future test he may send you for a second opinion... You can tell by that that he's not throwing you off the train... Good for you... Keep us posted and hang in there...
I'll be praying,
Carol
I'll be praying,
Carol
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