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Were you diagnosed with a normal MRI?
Hello, everyone. I made this account about five minutes ago and I don't know where to start.
I'm a 20 year old female and I've been "sick" for awhile. I've had random episodes with all sorts of symptoms for almost four years, but around January of this year my symptoms started becoming easier to distinguish.
I have intense lower back pain - electrical pain, really. I cannot look down or touch my chin to my chest without feeling an immediate "lightning bolt" through my back. If I raise my legs too high, I get that same shock. Several times a day I go numb from my toes and it works its way up all the way up to my crotch sometimes. The pins and needles are very hard to deal with. I go extremely numb any time I take a hot bath. I'm going numb from my fingertips to my elbows. Half of my face and tongue have randomly gone numb three times. Every day when I wake up, my limbs and my head are so heavy I can't lift them. I get dizzy the moment I lift my head and my boyfriend has to pull me out of bed. I'm extremely dizzy, I have intense migraines, chest pain, and awful muscle spasms. Double vision, temporary vision loss, etc. I'm depressed, but mainly because I'm tired of being sick. Some days I can't walk and others I'm just fine. I have to force my urine out. When I "relax" to pee, that's not enough. I have to close my eyes and focus every part of my attention on getting it out. I've had ridiculous brain fog, and that's very odd for me because I'm typically very aware of my surroundings. But my BACK...hurts so, so bad...
On 03/21/2017 I saw a spine specialist because it was originally thought that I had herniated discs. He said my problem sounded neurological and to go back to my PCP, have her order an MRI of my brain and refer me to a neurologist. I went back to my PCP and told her what the spine specialist said. She was very concerned and said it sounded like I have MS. I had a routine eye exam the next day, 03/23/2017. The eye doctor said I have optic neuritis and was very upset. He called my doctor and said I needed a lumbar puncture in addition to an MRI.
I had the MRI and the lumbar puncture done back to back on 03/31/2017. I have called every day since then asking for someone to tell me what's wrong with me, and everyone is sending me in circles saying they don't have my results. I DO have my results because they were uploaded on the patient portal. This is where my confusion comes in:
My MRI was normal. The notes said if my symptoms persist I might need a "dedicated orbital protocol MRI" ...okay. Not sure what that means, but on to my spinal tap: I had two red blood cells, which to my understanding just means blood could have gotten in it from the doctor inserting the needle. But it says I have ONE oligoclonal band. The notes say "Even though one band is technically negative, it means there could be several more bands coming soon. A second spinal tap might be necessary."
WHAT does this mean? I can't get a hold of anyone to interpret these results for me and I do not know how to manage my symptoms anymore while I wait. I'm in too much pain to DRIVE, and I'm twenty! I have an 18 month daughter that I can't take care of right now...
From my research, one band used to be enough to diagnose MS, but now they say you have to have four bands. There's also confusion of whether or not one band is normal. I read that the bands mean you have inflammation of the central nervous system, which conerns me since my eye doctor said my brain probably has inflammation from the optic neuritis.
Where do I go from here? My PCP and the hospital that did my tests are not giving me any answers. I have an appointment with a neurologist on May 3, but he has horrible reviews and I'm afraid to go see him. He's the only person who can see me before July, though.
I'm just lost and very, very tired.
I'm a 20 year old female and I've been "sick" for awhile. I've had random episodes with all sorts of symptoms for almost four years, but around January of this year my symptoms started becoming easier to distinguish.
I have intense lower back pain - electrical pain, really. I cannot look down or touch my chin to my chest without feeling an immediate "lightning bolt" through my back. If I raise my legs too high, I get that same shock. Several times a day I go numb from my toes and it works its way up all the way up to my crotch sometimes. The pins and needles are very hard to deal with. I go extremely numb any time I take a hot bath. I'm going numb from my fingertips to my elbows. Half of my face and tongue have randomly gone numb three times. Every day when I wake up, my limbs and my head are so heavy I can't lift them. I get dizzy the moment I lift my head and my boyfriend has to pull me out of bed. I'm extremely dizzy, I have intense migraines, chest pain, and awful muscle spasms. Double vision, temporary vision loss, etc. I'm depressed, but mainly because I'm tired of being sick. Some days I can't walk and others I'm just fine. I have to force my urine out. When I "relax" to pee, that's not enough. I have to close my eyes and focus every part of my attention on getting it out. I've had ridiculous brain fog, and that's very odd for me because I'm typically very aware of my surroundings. But my BACK...hurts so, so bad...
On 03/21/2017 I saw a spine specialist because it was originally thought that I had herniated discs. He said my problem sounded neurological and to go back to my PCP, have her order an MRI of my brain and refer me to a neurologist. I went back to my PCP and told her what the spine specialist said. She was very concerned and said it sounded like I have MS. I had a routine eye exam the next day, 03/23/2017. The eye doctor said I have optic neuritis and was very upset. He called my doctor and said I needed a lumbar puncture in addition to an MRI.
I had the MRI and the lumbar puncture done back to back on 03/31/2017. I have called every day since then asking for someone to tell me what's wrong with me, and everyone is sending me in circles saying they don't have my results. I DO have my results because they were uploaded on the patient portal. This is where my confusion comes in:
My MRI was normal. The notes said if my symptoms persist I might need a "dedicated orbital protocol MRI" ...okay. Not sure what that means, but on to my spinal tap: I had two red blood cells, which to my understanding just means blood could have gotten in it from the doctor inserting the needle. But it says I have ONE oligoclonal band. The notes say "Even though one band is technically negative, it means there could be several more bands coming soon. A second spinal tap might be necessary."
WHAT does this mean? I can't get a hold of anyone to interpret these results for me and I do not know how to manage my symptoms anymore while I wait. I'm in too much pain to DRIVE, and I'm twenty! I have an 18 month daughter that I can't take care of right now...
From my research, one band used to be enough to diagnose MS, but now they say you have to have four bands. There's also confusion of whether or not one band is normal. I read that the bands mean you have inflammation of the central nervous system, which conerns me since my eye doctor said my brain probably has inflammation from the optic neuritis.
Where do I go from here? My PCP and the hospital that did my tests are not giving me any answers. I have an appointment with a neurologist on May 3, but he has horrible reviews and I'm afraid to go see him. He's the only person who can see me before July, though.
I'm just lost and very, very tired.
COMMUNITY LEADER
Hi and welcome,
"dedicated orbital protocol MRI" is nothing to be concerned about it's just a specific type of MRI sequencing technique which is basically better at getting more specific imaging of the eyes and sinuses than a typical brain MRI is.....if this is in the context of your brain MRI not showing any evidence of Optic Neuritis (ON) the technician is suggesting if your visual symptoms persist an MRI using orbital protocol maybe necessary to show the ON.
Although it's more common with the visual symptoms to have visual nerve conductor, OCT etc tests done by an ophthalmologist, who will then based on your visual specific test evidence diagnose you with exactly what visual abnormality you have, with the addition of more individualised details and treatment options for ie Optic neuritis, Nystagmus, Diplopia etc
It is 'highly' unusual for anyone to be diagnosed with a neurological condition like MS if they don't have the suggestive and or consistent abnormal MRI and other related test evidence.....Multiple Sclerosis literally means 'many scars' and those scars show up on MRI's as a specific type of demyelinating lesion in specific locations in the brain and spinal cord.
The MS Mcdonald diagnostic criteria is specific to the types of MRI evidence required to meet the criteria for an MS diagnosis and from what your saying you don't have the minimum MRI evidence to meet the MS diagnostic criteria, which leaves the door wide open for an alternative medical explanation.
I'm honestly not sure if you do actually have visual diagnostic test evidence of Optic Neuritis or not, but even IF you do, having normal MRI's leaves the door open to the potential of the ON being a stand alone dx with the lowest statistics of being diagnosed with MS.
I've never heard of needing only 1 Oband for MS, as far as i'm aware it's always been a minimum of 2+ Obands unique to the serum to be 'suggestive' of MS. There are slightly different tests and depending on the lab eg Mayo, you may require 4+ but keep in mind that Obands are not exclusive test evidence of MS, so technically LP evidence of unique 2+ Obands would usually be added to all your other suggestive/consistent diagnostic evidence that points towards MS....
I don't see any mention of you having a spinal MRI, which would make sense for you to of had based on the symptoms you've mentioned and originally being suspected of having herniated discs, you've seen a spinal specialist but don't mention if the specialist ran any tests or if you had any abnormal clinical signs to base her opinion on, did she do any tests or just sent you back to your PCP to only arrange an MRI of your brain and not one of your spine too?
Sorry i'm not quite sure if structural spinal issues eg herniated discs, trapped nerve, scoliosis etc were completely ruled out or not as a possible causation....both upper and lower bilateral symptom type and pattern wouldn't usually be suggestive or consistent with MS, MS spinal cord lesions are usually not big enough to cut across the cord which is why bilateral, symmetric, all peripheral limbs etc are the typical red flags pointing away from neurological conditions like MS and in general more suggestive of the alternative explanations as causation.
It is understandably very frustrating waiting for answers, diagnostic limbo can test the best of us but you do have the earliest appointment you could get scheduled with a neurologist next month, which isn't as long as 3-6 months we often hear about......in the mean time I would suggest you seriously consider seeing an ophthalmologist and getting the Optic Neuritis officially diagnosed and have all the specific visual testing you need before your neuro appointment. IF you haven't had a full spinal MRI, that would definitely be worth doing, you might also want to consider getting a full physio assessment which would give you a report and some evidence of neurological abnormality even if it can't diagnose the condition, it would still provide specifics and possibly very helpful evident to add to what you currently have.
Take a deep breath, try to keep open minded and not get too worried that it might be MS, it honestly might not be a neurological condition like MS, being open minded at this stage of testing is always in anyone's best interest so if you can try to not get too overly focused on the possibility of any specific condition....
Hope that helps........JJ
"dedicated orbital protocol MRI" is nothing to be concerned about it's just a specific type of MRI sequencing technique which is basically better at getting more specific imaging of the eyes and sinuses than a typical brain MRI is.....if this is in the context of your brain MRI not showing any evidence of Optic Neuritis (ON) the technician is suggesting if your visual symptoms persist an MRI using orbital protocol maybe necessary to show the ON.
Although it's more common with the visual symptoms to have visual nerve conductor, OCT etc tests done by an ophthalmologist, who will then based on your visual specific test evidence diagnose you with exactly what visual abnormality you have, with the addition of more individualised details and treatment options for ie Optic neuritis, Nystagmus, Diplopia etc
It is 'highly' unusual for anyone to be diagnosed with a neurological condition like MS if they don't have the suggestive and or consistent abnormal MRI and other related test evidence.....Multiple Sclerosis literally means 'many scars' and those scars show up on MRI's as a specific type of demyelinating lesion in specific locations in the brain and spinal cord.
The MS Mcdonald diagnostic criteria is specific to the types of MRI evidence required to meet the criteria for an MS diagnosis and from what your saying you don't have the minimum MRI evidence to meet the MS diagnostic criteria, which leaves the door wide open for an alternative medical explanation.
I'm honestly not sure if you do actually have visual diagnostic test evidence of Optic Neuritis or not, but even IF you do, having normal MRI's leaves the door open to the potential of the ON being a stand alone dx with the lowest statistics of being diagnosed with MS.
I've never heard of needing only 1 Oband for MS, as far as i'm aware it's always been a minimum of 2+ Obands unique to the serum to be 'suggestive' of MS. There are slightly different tests and depending on the lab eg Mayo, you may require 4+ but keep in mind that Obands are not exclusive test evidence of MS, so technically LP evidence of unique 2+ Obands would usually be added to all your other suggestive/consistent diagnostic evidence that points towards MS....
I don't see any mention of you having a spinal MRI, which would make sense for you to of had based on the symptoms you've mentioned and originally being suspected of having herniated discs, you've seen a spinal specialist but don't mention if the specialist ran any tests or if you had any abnormal clinical signs to base her opinion on, did she do any tests or just sent you back to your PCP to only arrange an MRI of your brain and not one of your spine too?
Sorry i'm not quite sure if structural spinal issues eg herniated discs, trapped nerve, scoliosis etc were completely ruled out or not as a possible causation....both upper and lower bilateral symptom type and pattern wouldn't usually be suggestive or consistent with MS, MS spinal cord lesions are usually not big enough to cut across the cord which is why bilateral, symmetric, all peripheral limbs etc are the typical red flags pointing away from neurological conditions like MS and in general more suggestive of the alternative explanations as causation.
It is understandably very frustrating waiting for answers, diagnostic limbo can test the best of us but you do have the earliest appointment you could get scheduled with a neurologist next month, which isn't as long as 3-6 months we often hear about......in the mean time I would suggest you seriously consider seeing an ophthalmologist and getting the Optic Neuritis officially diagnosed and have all the specific visual testing you need before your neuro appointment. IF you haven't had a full spinal MRI, that would definitely be worth doing, you might also want to consider getting a full physio assessment which would give you a report and some evidence of neurological abnormality even if it can't diagnose the condition, it would still provide specifics and possibly very helpful evident to add to what you currently have.
Take a deep breath, try to keep open minded and not get too worried that it might be MS, it honestly might not be a neurological condition like MS, being open minded at this stage of testing is always in anyone's best interest so if you can try to not get too overly focused on the possibility of any specific condition....
Hope that helps........JJ
If it matters, my report says the oligoclonal band was ONLY in my fluid - not in my serum, too.
1 Comments
Sorry i got a bit lost with everything i was trying to cover and missed this extra bit.....okay generally when investigating CNS diseases it's usually the norm to subtract bands in serum from bands in cerebral spinal fluid (CSF), bands in both cancel each other out, unique bands are not normal so yes it does matter though keep in mind that 1 isn't in itself meaningful.
You said above you also had 2 red blood cells, normally the white blood cell count which is between 0 and 5 and has an association with MS, the normal 'red' blood cell count is 0 and those 2 red blood cells in the CSF may be due to the spinal tap needle hitting a blood vessel but 'red' blood cells in the CSF may be a sign of bleeding and point towards some of the alternate medical explanations.
LP's are results and interpretation are very complicated for lay people to work out and it is better to speak to your doctor about your results which should minimise the confusion.
Hope that helps.....JJ
You said above you also had 2 red blood cells, normally the white blood cell count which is between 0 and 5 and has an association with MS, the normal 'red' blood cell count is 0 and those 2 red blood cells in the CSF may be due to the spinal tap needle hitting a blood vessel but 'red' blood cells in the CSF may be a sign of bleeding and point towards some of the alternate medical explanations.
LP's are results and interpretation are very complicated for lay people to work out and it is better to speak to your doctor about your results which should minimise the confusion.
Hope that helps.....JJ
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