NaomiWise
08-07-2004, 11:06 AM
I have had my MRI of the brain and lesions were present. Now I'm scheduled for an MRI of the cerival and thoracic spine.
I quess I'm confused. If lesions show up in these next MRIs what does that mean? :confused: Do only MS sufferers have lesions on the spinal cord? If Lesions are present do Neuros generally do a lumbar puncture next? I quess what confuses me is why, if they need to have a complete picture, do they do these tests one at the time? Which test, spinal, cervical, thoracic MRI or lumbar puncture tells the doctors whether or not to diagnose MS?
Just wondering.
Naomi :wave:
I quess I'm confused. If lesions show up in these next MRIs what does that mean? :confused: Do only MS sufferers have lesions on the spinal cord? If Lesions are present do Neuros generally do a lumbar puncture next? I quess what confuses me is why, if they need to have a complete picture, do they do these tests one at the time? Which test, spinal, cervical, thoracic MRI or lumbar puncture tells the doctors whether or not to diagnose MS?
Just wondering.
Naomi :wave:
Sponsor
Juggernaut
08-07-2004, 12:09 PM
I don't know why they do each test separetely,but I do know with the lumbar puncture they are looking for a specific protein.
Jewel2
08-07-2004, 01:39 PM
Hi Naomi,
MS lesions can be throughout the brain and spine. If your doctor suspects you have MS then he may want a complete picture of what is happening in your body. I think it's great that you are getting a baseline at this point. A lot of doctors aren't so thorough.
If your clinical symptoms and your MRI's are conclusive enough, he may not order an LP. That was my daughter's situation. Between the films and her presenting symptoms and blood tests to rule out other possibilities it was quite obvious.
I hope everything turns out well for you.
Take care,
Julie
MS lesions can be throughout the brain and spine. If your doctor suspects you have MS then he may want a complete picture of what is happening in your body. I think it's great that you are getting a baseline at this point. A lot of doctors aren't so thorough.
If your clinical symptoms and your MRI's are conclusive enough, he may not order an LP. That was my daughter's situation. Between the films and her presenting symptoms and blood tests to rule out other possibilities it was quite obvious.
I hope everything turns out well for you.
Take care,
Julie
NaomiWise
08-07-2004, 03:24 PM
Thanks for the replies.
I guess what I had trouble understanding was that if a lumbar puncture can show proteins that are present w/ MS then why isn't it done 1st?
Don't you wish our bodies came with a user's manual? :)
Naomi
I guess what I had trouble understanding was that if a lumbar puncture can show proteins that are present w/ MS then why isn't it done 1st?
Don't you wish our bodies came with a user's manual? :)
Naomi
Jenn100
08-07-2004, 06:24 PM
Hi Naomi,
I can understand your confusion and frustration. I had my first MRI, with and without contrast, this past May because I was experiencing tingling(pins and needles) in my left leg and arm. I also had blurred vision. My MRI showed llesions consistent with the demyelinating process found in MS. All my other neuro. exams were normal. I'm 41 years old and have never had any past symptoms that would suggest MS. After my MRI at the ER, I was given the diagnosis of MS from the radiologist who performed the MRI. I was shocked of course. The next week I went to have an MRI of the Thoracic Spine. These came back normal. I was relieved of that! The Neurologist that was treating me said I needed a lumbar puncture to put the entire picture together. I had the lumbar and they found no mylein protein in the fluids but did find two gamma restriction bands. My blurred vision and other symptoms continued. I had had 2 lyme tests come back negative. On the advice of a friend who had seen a Lyme Literate MD, I made an appointment and had blood work that was send to a lab in California. My tests came back positive for a co-infection of Lyme called Babesiosis and many bands of lyme disease. The LLMD told me that Lyme disease left untreated for a long time, such as time (over 18 months) can produce lesions in the brain that are consistent with MS. I began treatment for the lyme infections first week in June. My vision returned to normal after a few weeks on antibiotics. The reason I am telling you this is that I never knew that there are other reasons other than MS that might produce lesions in the brain. It is important to get the entire picture, do the lumbar, and the other MRIs. I had visual field tests that showed that my vision was blurred due to inflammation and not permanent damage. I will be getting another opinion from another Neurologist next week. Most traditional Neurologists that I have seen want me to start treatment for MS. The LLMD that I am seeing says that if I start the MS medication this will suppress my immune system and he has boosted it up with supplements and vitamins to fight the lyme disease. I must admit I feel much better, but I hate having this "probable MS diagnosis hanging over my head. I would suggest getting another opinion from at least two Neurologists, if your insurance covers it. Also I found that getting copies of all your reports and MRI films is essential. These records belong to you and you should have them in your possession so that you can bring them to other doctors. Do you have other symptoms of MS other than the MRI, speech problems, motor skills problems, depression, etc. I have found these boards to be of tremendous help. Best of luck to you!
I can understand your confusion and frustration. I had my first MRI, with and without contrast, this past May because I was experiencing tingling(pins and needles) in my left leg and arm. I also had blurred vision. My MRI showed llesions consistent with the demyelinating process found in MS. All my other neuro. exams were normal. I'm 41 years old and have never had any past symptoms that would suggest MS. After my MRI at the ER, I was given the diagnosis of MS from the radiologist who performed the MRI. I was shocked of course. The next week I went to have an MRI of the Thoracic Spine. These came back normal. I was relieved of that! The Neurologist that was treating me said I needed a lumbar puncture to put the entire picture together. I had the lumbar and they found no mylein protein in the fluids but did find two gamma restriction bands. My blurred vision and other symptoms continued. I had had 2 lyme tests come back negative. On the advice of a friend who had seen a Lyme Literate MD, I made an appointment and had blood work that was send to a lab in California. My tests came back positive for a co-infection of Lyme called Babesiosis and many bands of lyme disease. The LLMD told me that Lyme disease left untreated for a long time, such as time (over 18 months) can produce lesions in the brain that are consistent with MS. I began treatment for the lyme infections first week in June. My vision returned to normal after a few weeks on antibiotics. The reason I am telling you this is that I never knew that there are other reasons other than MS that might produce lesions in the brain. It is important to get the entire picture, do the lumbar, and the other MRIs. I had visual field tests that showed that my vision was blurred due to inflammation and not permanent damage. I will be getting another opinion from another Neurologist next week. Most traditional Neurologists that I have seen want me to start treatment for MS. The LLMD that I am seeing says that if I start the MS medication this will suppress my immune system and he has boosted it up with supplements and vitamins to fight the lyme disease. I must admit I feel much better, but I hate having this "probable MS diagnosis hanging over my head. I would suggest getting another opinion from at least two Neurologists, if your insurance covers it. Also I found that getting copies of all your reports and MRI films is essential. These records belong to you and you should have them in your possession so that you can bring them to other doctors. Do you have other symptoms of MS other than the MRI, speech problems, motor skills problems, depression, etc. I have found these boards to be of tremendous help. Best of luck to you!
NaomiWise
08-07-2004, 07:41 PM
Hi Jen100,
I always assumed I'd know pretty quickly if I had Lymes disease. I've had two ticks attached to me this year which is odd. I'm going to do research into this to see if that is a possibility for me.
Other than problems w/ spasms and pain in my right leg and foot I'm not aware of other MS related problems. It was a shock for me to find out I had brain lesions. (Except that I'd always assumed my many migraines had done Some damage).
Thanks for the input!
Naomi :wave:
I always assumed I'd know pretty quickly if I had Lymes disease. I've had two ticks attached to me this year which is odd. I'm going to do research into this to see if that is a possibility for me.
Other than problems w/ spasms and pain in my right leg and foot I'm not aware of other MS related problems. It was a shock for me to find out I had brain lesions. (Except that I'd always assumed my many migraines had done Some damage).
Thanks for the input!
Naomi :wave:
Sharipdx
08-07-2004, 09:07 PM
I have brain lesions also, but the LP showed nada, and I have no real MS symptoms. They did the MRI for my headaches.
They are more hesitant to do the LP because it's invasive and can cause complications, and it seems pretty ominous to most people.
Shari
They are more hesitant to do the LP because it's invasive and can cause complications, and it seems pretty ominous to most people.
Shari
NaomiWise
08-07-2004, 09:12 PM
Shari,
You say you have headaches. Are they migraines? Have you had them for years? I have migraines and have wondered if that is what caused my lesions.
What does your doctor say about your lesions?
Naomi
You say you have headaches. Are they migraines? Have you had them for years? I have migraines and have wondered if that is what caused my lesions.
What does your doctor say about your lesions?
Naomi
1980bac
08-08-2004, 02:39 AM
Hey Naomi...
I share your confusion!
I noticed symptoms and had severe left leg weakness in Jan 03. At that time I had a brain MRI showed 4 lesions. The neurologist said nothing was wrong with me. My GP sent me to another neurologist for a 2nd opinion. He said my problems were related to Anxiety.
I got pregnant and had my baby in February of this year. By May, I was doing really bad. I didn't want to go back to the second neurologist. I waited and one day starting having problems with my eyes. Went to an Opthalmologist who suggested I go to another neurologist.
I went to this new neurologist last Thursday. She is an MS Specialist. She said that at this point, we know that something IS wrong, but it's a matter of ruling out all other possibilities since the lesions on the MRI are new and could be indicative of a number of possibilities.
She also said that with MS it's more of a diagnosis of interpretation...sometimes the lesions on MRI are quite typical in pattern and location, other times they are not. One neurologist could look at it and say you were fine another could match it up with your symptoms and say something was wrong.
Consider yourself lucky that your neurologist is doing such a thorough job trying to figure out what is causing the lesions.
My neurologist also explained the spinal tap as more of a 50/50 indicator that someone has MS. If the test is positive, it only means you COULD have MS, but it is helpful in diagnosis. If it's negative, it means nothing. Some people with MS have a normal LP. She said she had one patient with clinically definite MS not have a positive LP for 4 years after her dx.
She ordered a spinal tap which I had yesterday, Visual Evoked Potentials for Monday, and another brain MRI for Tuesday.
Please keep me updated on how your tests go!
~Dana
I share your confusion!
I noticed symptoms and had severe left leg weakness in Jan 03. At that time I had a brain MRI showed 4 lesions. The neurologist said nothing was wrong with me. My GP sent me to another neurologist for a 2nd opinion. He said my problems were related to Anxiety.
I got pregnant and had my baby in February of this year. By May, I was doing really bad. I didn't want to go back to the second neurologist. I waited and one day starting having problems with my eyes. Went to an Opthalmologist who suggested I go to another neurologist.
I went to this new neurologist last Thursday. She is an MS Specialist. She said that at this point, we know that something IS wrong, but it's a matter of ruling out all other possibilities since the lesions on the MRI are new and could be indicative of a number of possibilities.
She also said that with MS it's more of a diagnosis of interpretation...sometimes the lesions on MRI are quite typical in pattern and location, other times they are not. One neurologist could look at it and say you were fine another could match it up with your symptoms and say something was wrong.
Consider yourself lucky that your neurologist is doing such a thorough job trying to figure out what is causing the lesions.
My neurologist also explained the spinal tap as more of a 50/50 indicator that someone has MS. If the test is positive, it only means you COULD have MS, but it is helpful in diagnosis. If it's negative, it means nothing. Some people with MS have a normal LP. She said she had one patient with clinically definite MS not have a positive LP for 4 years after her dx.
She ordered a spinal tap which I had yesterday, Visual Evoked Potentials for Monday, and another brain MRI for Tuesday.
Please keep me updated on how your tests go!
~Dana
Jewel2
08-08-2004, 03:36 PM
Hi Everyone,
Here are a few (of many) possible conditions that would result in 'lesions' on the MRI:
Condition - MRI Features
Multiple Sclerosis - Multifocal, asymmetrical, periventricular lesions
ADEM - Can be identical to MS. Symmetrical cerebral, basal ganglia or cerebral lesions in some
Ageing - Usually less extensive than MS. Discrete lesions. Little posteria fossa involvement
Behcet's syndrome - Prominent brain stem involvement
Fat embolism - High signal lesions on T1-weighted images, high or low signal on T2-weighted
HIV encephalitis - Patchy or punctate white matter lesions, commonly involving basal ganglia. Diffuse pattern in AIDS dementia complex
Irradiation - Diffuse periventricular and sub-cortical lesions
Leucodystrophies - Various patterns of extensive symmetrical white matter abnormalities; atrophy
Migraine - A few more discrete lesions than age-matched controls
Neurosarcoidosis - Can be identical to MS but also large parenchymal lesions, prominent basal involvement and diffuse menigeal enhancement
Phenylketonuria - Periventricular and sub-cortical changes
Subacute sclerosing - Few scattered white matter lesions
panencephalitis
Systemic lupus arterial - Many sub-cortical lesions; lesions involving
erythmatosus territories
Trauma - Variable
And there are even more than this, but I just wanted to show that lesions can have a variety of causes from simply aging or migraines to much more complicated problems.
**********************
I know you have been wondering why you are having to undergo various diagnostic tests. Basically, in April, 2001, an international panel in association with the NMSS of America recommended revised diagnostic criteria for multiple sclerosis. Many doctors are trying to adhere to the current diagnostic criteria, but others still haven't caught up or have chosen not to follow this recommendation. These new criteria have become known as the McDonald criteria (named after their lead author). They make use of advances in MRI imaging techniques and are intended to replace the Poser Criteria and the older Schumacher Criteria. I've listed the criteria below. The bold words are the clinical presention, and the italics are what is needed in addition to the clinical presentation in order to get an MS diagnosis.
Clinical Presentation - Additional Data Needed
2 or more attacks (relapses)
2 or more objective clinical lesions
None; clinical evidence will suffice
(additional evidence desirable but must be consistent with MS)
2 or more attacks
1 objective clinical lesion
Dissemination in space, demonstrated by:
MRI
or a positive CSF and 2 or more MRI lesions consistent with MS
or further clinical attack involving different site
1 attack
2 or more objective clinical lesions
Dissemination in time, demonstrated by:
MRI
or second clinical attack
1 attack
1 objective clinical lesion
(monosymptomatic presentation)
Dissemination in space by demonstrated by:
MRI
or positive CSF and 2 or more MRI lesions consistent with MS
and
Dissemination in time demonstrated by:
MRI
or second clinical attack
Insidious neurological progression
suggestive of MS
(primary progressive MS)
Positive CSF
and
Dissemination in space demonstrated by:
MRI evidence of 9 or more T2 brain lesions
or 2 or more spinal cord lesions
or 4-8 brain and 1 spinal cord lesion
or positive VEP with 4-8 MRI lesions
or positive VEP with <4 brain lesions plus 1 spinal cord lesion
and
Dissemination in time demonstrated by:
MRI
or continued progression for 1 year
I hope this distillation of information helps answer some of your questions, but more importantly - I hope you don't have MS!!
Julie
Here are a few (of many) possible conditions that would result in 'lesions' on the MRI:
Condition - MRI Features
Multiple Sclerosis - Multifocal, asymmetrical, periventricular lesions
ADEM - Can be identical to MS. Symmetrical cerebral, basal ganglia or cerebral lesions in some
Ageing - Usually less extensive than MS. Discrete lesions. Little posteria fossa involvement
Behcet's syndrome - Prominent brain stem involvement
Fat embolism - High signal lesions on T1-weighted images, high or low signal on T2-weighted
HIV encephalitis - Patchy or punctate white matter lesions, commonly involving basal ganglia. Diffuse pattern in AIDS dementia complex
Irradiation - Diffuse periventricular and sub-cortical lesions
Leucodystrophies - Various patterns of extensive symmetrical white matter abnormalities; atrophy
Migraine - A few more discrete lesions than age-matched controls
Neurosarcoidosis - Can be identical to MS but also large parenchymal lesions, prominent basal involvement and diffuse menigeal enhancement
Phenylketonuria - Periventricular and sub-cortical changes
Subacute sclerosing - Few scattered white matter lesions
panencephalitis
Systemic lupus arterial - Many sub-cortical lesions; lesions involving
erythmatosus territories
Trauma - Variable
And there are even more than this, but I just wanted to show that lesions can have a variety of causes from simply aging or migraines to much more complicated problems.
**********************
I know you have been wondering why you are having to undergo various diagnostic tests. Basically, in April, 2001, an international panel in association with the NMSS of America recommended revised diagnostic criteria for multiple sclerosis. Many doctors are trying to adhere to the current diagnostic criteria, but others still haven't caught up or have chosen not to follow this recommendation. These new criteria have become known as the McDonald criteria (named after their lead author). They make use of advances in MRI imaging techniques and are intended to replace the Poser Criteria and the older Schumacher Criteria. I've listed the criteria below. The bold words are the clinical presention, and the italics are what is needed in addition to the clinical presentation in order to get an MS diagnosis.
Clinical Presentation - Additional Data Needed
2 or more attacks (relapses)
2 or more objective clinical lesions
None; clinical evidence will suffice
(additional evidence desirable but must be consistent with MS)
2 or more attacks
1 objective clinical lesion
Dissemination in space, demonstrated by:
MRI
or a positive CSF and 2 or more MRI lesions consistent with MS
or further clinical attack involving different site
1 attack
2 or more objective clinical lesions
Dissemination in time, demonstrated by:
MRI
or second clinical attack
1 attack
1 objective clinical lesion
(monosymptomatic presentation)
Dissemination in space by demonstrated by:
MRI
or positive CSF and 2 or more MRI lesions consistent with MS
and
Dissemination in time demonstrated by:
MRI
or second clinical attack
Insidious neurological progression
suggestive of MS
(primary progressive MS)
Positive CSF
and
Dissemination in space demonstrated by:
MRI evidence of 9 or more T2 brain lesions
or 2 or more spinal cord lesions
or 4-8 brain and 1 spinal cord lesion
or positive VEP with 4-8 MRI lesions
or positive VEP with <4 brain lesions plus 1 spinal cord lesion
and
Dissemination in time demonstrated by:
MRI
or continued progression for 1 year
I hope this distillation of information helps answer some of your questions, but more importantly - I hope you don't have MS!!
Julie
catbirdpondlady
08-08-2004, 04:23 PM
Jewel,
What a great over-view of all that is going on dx wise right now. Important info for all of us. Keep up the vigilant work!
My MS relapse has gotten really out of control........after the high dose oral prednisone, the taper left me worse than when I had begun. I have had 5 days of a gram of Solu-Medrol IV every day. To start a prednisone taper again tomorrow (100mg/day). Also, rec'd Novantrone on Friday. It has really wiped me out, but I can walk with my walker and speak a bit more clearly now. Hope it doesn't hit my blood count too severely. I will find that out tomorrow when I get the IVIG for the CVIDS.
I haven't slep in days because of the steroids and I am really running on empty. Please send some good energy my way :)
Love to you all,
Penny
What a great over-view of all that is going on dx wise right now. Important info for all of us. Keep up the vigilant work!
My MS relapse has gotten really out of control........after the high dose oral prednisone, the taper left me worse than when I had begun. I have had 5 days of a gram of Solu-Medrol IV every day. To start a prednisone taper again tomorrow (100mg/day). Also, rec'd Novantrone on Friday. It has really wiped me out, but I can walk with my walker and speak a bit more clearly now. Hope it doesn't hit my blood count too severely. I will find that out tomorrow when I get the IVIG for the CVIDS.
I haven't slep in days because of the steroids and I am really running on empty. Please send some good energy my way :)
Love to you all,
Penny
Jewel2
08-08-2004, 05:36 PM
You got it Penny. I can really sympathize - my daughter is going throught the same thing right now. She's in the hospital for her solumedrol. She's on day 3.
Lots of love, prayers and good wishes being sent your way.
Julie
Lots of love, prayers and good wishes being sent your way.
Julie
NaomiWise
08-08-2004, 06:51 PM
Thanks so much for all of that information. I am one of those people that want all of the answers right now....and this is one of those health issues that you can't just test the blood for a quick diagnosis.
It helps tremendously to have folks like you that take the time to educate me.
I have my other MRIs tomorrow. I have a lot of people praying for me that these MRIs come back clean.
I think, most of all, that if I do get an MS diagnosis I may not be quite as fearful.
A lady that has MS in our church has been wheelchair bound for nearly four months. This morning she walked in with braces. Just seeing her up and walking eased my fears so much!
Thank you all and I'm keeping you in my prayers, :angel:
Naomi
It helps tremendously to have folks like you that take the time to educate me.
I have my other MRIs tomorrow. I have a lot of people praying for me that these MRIs come back clean.
I think, most of all, that if I do get an MS diagnosis I may not be quite as fearful.
A lady that has MS in our church has been wheelchair bound for nearly four months. This morning she walked in with braces. Just seeing her up and walking eased my fears so much!
Thank you all and I'm keeping you in my prayers, :angel:
Naomi
catbirdpondlady
08-09-2004, 08:13 AM
MS has been very difficult to diagnose over the years. They just about have had to "rule Out" everything elso to come up with our diagnoses. Right now, lesions showing in the brain (and/or spinal cord) are pretty definitifve. They look for patterns, sizes, locations, etc. Not everyone that has lesions in their brain has lesions in their spinal cord. Not everyone that has MS has oligoclonal bands in their spinal tap fluid. It used to be that if that protein was not present in CSF you didn't have MS They have come full circle with that theory, now. I definitely have MS and have never been positive for oligoclonal bands.
The real key is for you doctors to be able to "put the pieces together" from all of the testing that has been done and come up with a viable workable diagnosis.
In the mean time it leaves us wondering and confused (and rightly so). Try to keep a positive attitude, ask a lot of questions of your docs and keep posting here. This is a great place to find some reasonably good info and a shoulder to lean on!
Love,
Penny
The real key is for you doctors to be able to "put the pieces together" from all of the testing that has been done and come up with a viable workable diagnosis.
In the mean time it leaves us wondering and confused (and rightly so). Try to keep a positive attitude, ask a lot of questions of your docs and keep posting here. This is a great place to find some reasonably good info and a shoulder to lean on!
Love,
Penny
Jewel2
09-02-2004, 12:11 AM
Bumping up for Dean and anybody else this might help.
Jewel2
12-12-2004, 11:32 PM
Bumping this up for ratpuppy.
Ratpuppy1
12-13-2004, 08:46 AM
Well that is very helpful! Thank you very much Jewel!!!!
KiRin1
04-11-2005, 09:50 PM
I am new to this site and new to the whole MS thing. I am wondering is it possible to have only one lession?? I have a lot of the symptoms of MS. Could someone please let me know. I am just wondering if there is someone else out there that has the same basic problem??
Please help,
Ki-Rin
Please help,
Ki-Rin
Jewel2
04-11-2005, 09:57 PM
Hello Ki-Rin,
Welcome to the forum. You didn't mention what kind of MRI you had, open or closed, with and/or without contrast. These things make a difference in what can be seen on the film. I recently read that lesions smaller than 2 mm cannot be seen with today's MRI machines. If that is true, then that explains why a lot of people have MS symptoms, but the MRIs look normal. Until those lesions grow bigger, they may not be detectable.
Just so you don't feel so alone, there are a lot of people on this forum who are in what we call "Limboland." They have a lot of the symptoms of MS, but their MRIs and LPs look normal.
You didn't mention what your symptoms are, but has your doctor run tests to rule out other things that mimic MS?
Take care,
Julie
Welcome to the forum. You didn't mention what kind of MRI you had, open or closed, with and/or without contrast. These things make a difference in what can be seen on the film. I recently read that lesions smaller than 2 mm cannot be seen with today's MRI machines. If that is true, then that explains why a lot of people have MS symptoms, but the MRIs look normal. Until those lesions grow bigger, they may not be detectable.
Just so you don't feel so alone, there are a lot of people on this forum who are in what we call "Limboland." They have a lot of the symptoms of MS, but their MRIs and LPs look normal.
You didn't mention what your symptoms are, but has your doctor run tests to rule out other things that mimic MS?
Take care,
Julie