Aa
MRI question..contrast, etc
32 yr old with MS symptoms, having a hard time getting it considered as the source of my many neuro problems...would like to rule out or in...
Is having a c-spine MRI with no contrast acceptable to show any MS lesions...is there special contrast that should be requested if looking for lesions in an MRI of brain or spine and if mine were done on a 1.5 T machine and were considered normal should I request new ones to be done on a better machine...just trying to get all my bases covered. Also is "decreased brain paranchyma and widened sulci" on a CT something I should worry about at 32 with MS symptoms? None of my studies were done to rule MS out or in by the way all of this has been done for other reasons, I seem to be the only one considering lumping all of my problems into one illness...MS, none of my DRs seem to bring that up. thanks
Is having a c-spine MRI with no contrast acceptable to show any MS lesions...is there special contrast that should be requested if looking for lesions in an MRI of brain or spine and if mine were done on a 1.5 T machine and were considered normal should I request new ones to be done on a better machine...just trying to get all my bases covered. Also is "decreased brain paranchyma and widened sulci" on a CT something I should worry about at 32 with MS symptoms? None of my studies were done to rule MS out or in by the way all of this has been done for other reasons, I seem to be the only one considering lumping all of my problems into one illness...MS, none of my DRs seem to bring that up. thanks
question about the nystagmus....I have never had "nystagmus" i guess, no one has ever actually seen my eyes do it but Ii have a lot of times where i feel like that is what my eyes are doing, wha tis is that, it is one of my most troubling visual symptoms, my world just seems to osscilate sometimes, sometimes very finely and sometimes violently...usually things move horizontally very quickly but sometimes vertically like if I am looking at lines of words. is there a definition for someting that feels like nystagmus without the actual eye movt...? another ?...I have blurry vision, also a troubling visual symptom but my acuity is 20/30 (down from 20/20 in march) my optho said she did not understand why I was complaining about blurry vision when my acuity was OK, but it is not my acuity, I mean i can see things they are just blurry...even the giant e at the top of the chart, i can read it but it just looks fuzzy...is that typical for "MS blurry vision", it is definately worse in my r eye where i have pain but sometimes my vioion seems fine...what would cause this...since you seem to be kinda of guru of eye stuff....thanks
Rachel,
You've been through heck and back with the neuro's.Please keep in mind that MS specialist are compassionate and straight forth.
They specialize in MS vs. a general neuro who's knowledge is average at best.
What test have you had done so far,get copies of all these records and take them with you.
Thats great that you got into this specialist that quick.Going and hearing what he has to say won't cost that much and if you have had any prior testing that will help also.
Having a more in depth specialist may guide you to a proper Dx if its MS or not.Not all Drs in the medical community are bad,its finding the right one that has the compassion to listen and they are out there.
This Dr will be able to tell through his series of office test what to look for and what test may be needed to be scheduled.
Do it for you,you need to do this for your son.If you are not well thats not fair to you and there's no need to suffer through this.
You've been through heck and back with the neuro's.Please keep in mind that MS specialist are compassionate and straight forth.
They specialize in MS vs. a general neuro who's knowledge is average at best.
What test have you had done so far,get copies of all these records and take them with you.
Thats great that you got into this specialist that quick.Going and hearing what he has to say won't cost that much and if you have had any prior testing that will help also.
Having a more in depth specialist may guide you to a proper Dx if its MS or not.Not all Drs in the medical community are bad,its finding the right one that has the compassion to listen and they are out there.
This Dr will be able to tell through his series of office test what to look for and what test may be needed to be scheduled.
Do it for you,you need to do this for your son.If you are not well thats not fair to you and there's no need to suffer through this.
Guess I should read first,type second/
Get copies of the MRI's and the CT scan and take them with you to that appointment.
Let the specialist read the MRI's.My MS neuro never wants the report he wants the films.
Get copies of the MRI's and the CT scan and take them with you to that appointment.
Let the specialist read the MRI's.My MS neuro never wants the report he wants the films.
INO/BINO is a form of nystagmus that effects the horizontal lateral gaze It can can play havoc with double vision usually painless unless you have optical neuritis.
Detected in a neuro's office but confirmed through a ENG/VNG done by either a ENT or neuroOtologist.
There is no cure for it.Its livable.Not a common symptom of MS ,but one that has been more reconized through studies.
Many MS patients have never heard of it.
Detected in a neuro's office but confirmed through a ENG/VNG done by either a ENT or neuroOtologist.
There is no cure for it.Its livable.Not a common symptom of MS ,but one that has been more reconized through studies.
Many MS patients have never heard of it.
woops.... I guess I am just suspicious, because I basically looke up every neurologist at VCU and UVA (only 1 at VCU who specializes in MS and I emailed hime...he emailed me the same day say he would be happy to evaluate me....I guess with what I have already been through I just do not trust neurologists and I am afraid if I have to pay out of pocket for testing and all, maybe even spending thousands of dollars that anyone will pretend to listen to you and do whatever you want them to do to you for that ind of money...his secretary actually called me today and has set upa n appointment for next wekk...i do not know how if will get there since i am uncomfortable driving right now...i just do not have a lot of money and am mistrustful...i guess that is what it boils down to...his name is dr. beckenstein...dont know if you have heard of him....
oh i am tired, have spent most of the day on the couch, had to take my son to the doctor that was enough for the day...
oh i am tired, have spent most of the day on the couch, had to take my son to the doctor that was enough for the day...
I didn't know you had INO - InterNuclear Ophthalmoplegia. Tell me what you know. Will this cause an adult "lazy eye" phenomenon? Or does it cause diplopia, nystagmus?
Quix
Quix
Now I'll jump in.
Rachel,I'm one off the few that has been DX'd with MS without MRI use.
Let me clarify myself,the MRI's did not detect the lesions,but the evoked potentials and a ENG/VNG (a hearing evoked potential)detected brain stem lesions and lesions of the left hemisphere.
I also have brain atrophy consistant with demyelination associated with MS plus my LP was abnormal, I had no O-bands but the IgG synthesis and the myelin basic proteinw as extremly high.
The clue to my new MS neuro was the myelin basic protein,my body is attacking the myelin sheath around the nerves and slowly peeling off the covering of the nerves.(example would be an electric cord and the plastic cover coming off and having exposed wires).Most facilities don't check the myelin basic protein in the spinal fluid.But at the time the mayo clinic was doing a study.
My Dx was made on all the abnormal EP test ,the LP and the standard neurological testing.Plus I have INO/BINO a form of nystagmus which is usually found primarily in MS patients but usually not printed in standard MS literature.
You need to get copies of all your medical records and reveiw them yourself.
Rachel,I'm one off the few that has been DX'd with MS without MRI use.
Let me clarify myself,the MRI's did not detect the lesions,but the evoked potentials and a ENG/VNG (a hearing evoked potential)detected brain stem lesions and lesions of the left hemisphere.
I also have brain atrophy consistant with demyelination associated with MS plus my LP was abnormal, I had no O-bands but the IgG synthesis and the myelin basic proteinw as extremly high.
The clue to my new MS neuro was the myelin basic protein,my body is attacking the myelin sheath around the nerves and slowly peeling off the covering of the nerves.(example would be an electric cord and the plastic cover coming off and having exposed wires).Most facilities don't check the myelin basic protein in the spinal fluid.But at the time the mayo clinic was doing a study.
My Dx was made on all the abnormal EP test ,the LP and the standard neurological testing.Plus I have INO/BINO a form of nystagmus which is usually found primarily in MS patients but usually not printed in standard MS literature.
You need to get copies of all your medical records and reveiw them yourself.
Sorry, I try to recheck and remember what people have told me, but I respond to a lot of different stories. You did tell me about your relexes. Why do you suspect the new neuro may be doing it for the money?
Quix
Quix
yeah, i talked about the reflex thing, don't know, have not been told...assuming that means normal, some say 2 some say 3, but like I said alot of the times I do not get a full neuro exam or m y symptoms are gone by the time i get examined, i am keeping a log and was actually just contacted by a neuro in richmond who says he is willing to complete some of the testing I have not had done yet, he speializes in MS but am afraid he may only be after my money. I have had RPR, FTA, ANA, lyme copper, ESR-told they were all normal...i will probably be seeing a rheumatologist soon, my PCP and I both beleive I have EDS (ehlers danlos) I will probably get genetic testing to find out which type, maybe she can rule out some other possible autoimmune stuff.
Rachel, talk to us like friends. We know you now. You sound so formal and anonymous. Anonymous is okay, but you are among non-judgmental friends here. I know you're upset. That's why I wrote such a long post to you on the other forum. You might want to reread what I wrote and we could discuss it. You are welcome (as are all of you) to email me at an account I set up just for people here. My email nickname is neuroquix and my email account is on gmail dot com. We'll see if that gets deleted. We're not supposed to give out personal info.
And I think your decision about how you want to spend your life is quite valid. It also doesn't have to be irrevocable. You could take a year leave, spend it with your kids, straighten out your health issues and then decide. When I was training we had residency sharing so that two people spent half the time and twice as long (roughly) sharing a residency position to allow for family life. Do those still exist? If you'd like we could dicuss matters like this privately.
The MRI without contrast will miss very new lesions that have not scarred. they still have the same consistency as normal brain tissue. The contrast is taken up by the surrounding inflammation and increased blood flow. So if done without contrast, new lesions will be missed.
It has been documented by real studies doing imaging back to back on the 1.5 and the 3.0 Tesla machines - that the newer, more powerful machines pick up many more lesions.
I had a normal C&T spine on a 1.5T machine in February and in May my MRI on the 3T machine showed 6 old lesions.
Lynn will speak up here, I bet. Yes, I think it is VERY significant that you have a loss of brain volume as indicated by decreased brain tissue and widening of the brain folds, the "sulci." Any good MS specialist knows that our MRI's do not pick up all, and perhaps not even the majority of, MS lesions. Even so, they still rely on the appearance of lesions to nail the diagnosis. It is possible to have so many, small, invisible lesions to have the first sign be actual loss of brain volume as those lesions scar down. Some docs will make the diagnosis without actual MRI lesions, but there has to be corroborating evidence from the physical exam, EP's, and/or LP. Lynn, you're on!
Also, the full serologic work up for myelopathy must be done to rule out all other "more likely" alternatives.
A partial list of the lab work needed is: RPR, ANA, anti-phospholipid antibodies, antibodies to HTLV I & II, Lyme, Copper ceruloplasm, B12, HIV, ESR, CRP.
Rachel, we need you to get all your records. But, mostly you need a comprehensive timeline of your symptom course to present to a new neurologist. You need to see someone that has not already dismissed you and who HAS NOT spoken to the docs who have dismissed you. Did I ask you about your reflexes? How active are they?
Quix
And I think your decision about how you want to spend your life is quite valid. It also doesn't have to be irrevocable. You could take a year leave, spend it with your kids, straighten out your health issues and then decide. When I was training we had residency sharing so that two people spent half the time and twice as long (roughly) sharing a residency position to allow for family life. Do those still exist? If you'd like we could dicuss matters like this privately.
The MRI without contrast will miss very new lesions that have not scarred. they still have the same consistency as normal brain tissue. The contrast is taken up by the surrounding inflammation and increased blood flow. So if done without contrast, new lesions will be missed.
It has been documented by real studies doing imaging back to back on the 1.5 and the 3.0 Tesla machines - that the newer, more powerful machines pick up many more lesions.
I had a normal C&T spine on a 1.5T machine in February and in May my MRI on the 3T machine showed 6 old lesions.
Lynn will speak up here, I bet. Yes, I think it is VERY significant that you have a loss of brain volume as indicated by decreased brain tissue and widening of the brain folds, the "sulci." Any good MS specialist knows that our MRI's do not pick up all, and perhaps not even the majority of, MS lesions. Even so, they still rely on the appearance of lesions to nail the diagnosis. It is possible to have so many, small, invisible lesions to have the first sign be actual loss of brain volume as those lesions scar down. Some docs will make the diagnosis without actual MRI lesions, but there has to be corroborating evidence from the physical exam, EP's, and/or LP. Lynn, you're on!
Also, the full serologic work up for myelopathy must be done to rule out all other "more likely" alternatives.
A partial list of the lab work needed is: RPR, ANA, anti-phospholipid antibodies, antibodies to HTLV I & II, Lyme, Copper ceruloplasm, B12, HIV, ESR, CRP.
Rachel, we need you to get all your records. But, mostly you need a comprehensive timeline of your symptom course to present to a new neurologist. You need to see someone that has not already dismissed you and who HAS NOT spoken to the docs who have dismissed you. Did I ask you about your reflexes? How active are they?
Quix
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