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MS Limbo, Lesions, Negative Lumbar results
I will try (but fail) to be brief, but I am new to posting in forums regarding my concerns and emotions are high, please bare with me if I have trouble staying on track. (If you're a cliff notes kind of person, I respect that, feel free to skip on to the 2nd to last paragraph and thank you.)
Most of what I will lay before you in the form of a long question exercises hindsight in abundance. In Fall of 2001 (age 23) I had about a week of unexplained dizziness, weakness, tingling, and visual disturbances, resulted in vomiting. After I felt better, I put it behind me and moved on, thought nothing of it until 14 years later. I was medically boring for approximately 8 years thereafter (excluding 1 broken arm and 3 c-sections) in 2009 I began making excuses for recurrent problematic episodes. I was so dizzy and fatigued I slammed my hand in the car door so hard it bled. I was so disoriented I tripped in a parking lot and injured my foot. I had confusion, severe fatigue, and dizziness and always had an "answer". (I worked out too hard, my hormones are a wreck ect...) The following year (as I recall) was somewhat less eventful so again, I put the previous episodes behind me as a thing of the past. in 2011 there were problems again (mind you I had no insurance during these years so these things were not tracked medically) in 2011 I was sick on family vacations vomiting, fatigue, headaches, and unable to get out of bed. With many other seemingly isolated incidences throughout. 2012 was less remarkable. 2013 was horrific (age 35). So VERY MANY episodes and more symptoms, slurred speech, tingling head and face, visual disturbances, a lot of dizziness and vomiting. I was under a lot of stress that year. Spent a lot of time outdoors in TX heat for volunteer work, had a troubled niece living with us, home under construction, brother in law staying on our couch. By this time I had insurance and went to the DR. They tested almost everything. My almost everything is exactly as is medically desirable. They did mammograms, sent me home with a kit to test sugars daily, full metabolic panel, checked for vitamin deficencies, checked blood pressure, checked heart rate, checked hormones, and iron levels (all normal). At this time an MRI was suggested, but I convinced myself if all my other tests were normal an MRI was overkill and maybe it was stress. The following year 2014 was far less remarkable and as everything in our life had "gone back to normal" and I was far less stressed I assumed I was correct and it must have been stress. In 2015 I had little to know stress and all the symptoms came back, early in the year and brought new symptoms with it." Now every time I go out in the heat my whole face and head start to tingle followed by my limbs. The fatigue in face of the heat is almost insurmountable. I have more slurred or slow speech, but not enough that anyone seems to notice it aside from myself, Too much time exercising does me in (and I am otherwise apparently healthy), some days muscles feel too stiff to exert for anything without pain, other days they feel like jello, some days I notice when I am on my treadmill I can not stay in a straight line, I have short term memory problems, trouble emptying my bladder, and the occasional headaches are back with what feels like lightning traveling in my body. The idea of MS did not really register with me until my MRI came back with 4 lesions in the periventricular white matter. A lumbar puncture was ordered and came back high in Albumin (39.7 mg/dl *range is14 - 25*) and elevated CSF protein 52mg/dl *range 15-45* and no oligoclonal bands. The neurologist reviewed it and said LP was 100% definitive answer and no bands means no MS. She was ready to send me home, but I was visibly upset. She said, "Most people are happy when I tell them they don't have MS!" I said, I just hoped you'd give me more direction. I've been sick off and on for 6 years and there are lesions on my brain, MS or not I'd hoped you'd give me a direction to go on. I am sick of making excuses for being sick. I'm sick of being sick. When I said I wanted a second opinion from another facility on my MRI, she said, "Well hold on, let me go look at your MRI again, on the bigger screen, and let me ask my colleague he specializes in MS." A few minutes later they are both in the room he says what he sees on my MRI is concerning and he can not rule out MS based on the negative results of the LP. He would like to use an MRI more suited to the specific needs of an MS study (It is a much stronger MRI) and do an examination of the spine as well as an exam of the eyes.
Hindsight is my new best friend and my new best friend tells me this was ANYTHING but brief. Apologies to anyone who feels cheated at my attempt to be "brief", but much thankfulness to anyone who managed to follow my drivel to completion, and more so to anyone who reaches out in any response regarding the following question/s:
Is it possible to reach a dx with a negative LP results? I first received an MRI on a lesser machine (T2?), discovered lesions, (I have 4 PWM lesions) if I move on to a better MRI machine (T7?) what are the chances of getting more accurate information? Can someone be diagnosed by lesions and symptoms alone? How common is it to be diagnosed using specialized eye exam in conjunction with MRI?
**I refused my own right/responsibility to spell/grammar check as I am exhausted from writing and research. Thank you for your understanding and thank you, in advance, for your thoughtful responses.
Most of what I will lay before you in the form of a long question exercises hindsight in abundance. In Fall of 2001 (age 23) I had about a week of unexplained dizziness, weakness, tingling, and visual disturbances, resulted in vomiting. After I felt better, I put it behind me and moved on, thought nothing of it until 14 years later. I was medically boring for approximately 8 years thereafter (excluding 1 broken arm and 3 c-sections) in 2009 I began making excuses for recurrent problematic episodes. I was so dizzy and fatigued I slammed my hand in the car door so hard it bled. I was so disoriented I tripped in a parking lot and injured my foot. I had confusion, severe fatigue, and dizziness and always had an "answer". (I worked out too hard, my hormones are a wreck ect...) The following year (as I recall) was somewhat less eventful so again, I put the previous episodes behind me as a thing of the past. in 2011 there were problems again (mind you I had no insurance during these years so these things were not tracked medically) in 2011 I was sick on family vacations vomiting, fatigue, headaches, and unable to get out of bed. With many other seemingly isolated incidences throughout. 2012 was less remarkable. 2013 was horrific (age 35). So VERY MANY episodes and more symptoms, slurred speech, tingling head and face, visual disturbances, a lot of dizziness and vomiting. I was under a lot of stress that year. Spent a lot of time outdoors in TX heat for volunteer work, had a troubled niece living with us, home under construction, brother in law staying on our couch. By this time I had insurance and went to the DR. They tested almost everything. My almost everything is exactly as is medically desirable. They did mammograms, sent me home with a kit to test sugars daily, full metabolic panel, checked for vitamin deficencies, checked blood pressure, checked heart rate, checked hormones, and iron levels (all normal). At this time an MRI was suggested, but I convinced myself if all my other tests were normal an MRI was overkill and maybe it was stress. The following year 2014 was far less remarkable and as everything in our life had "gone back to normal" and I was far less stressed I assumed I was correct and it must have been stress. In 2015 I had little to know stress and all the symptoms came back, early in the year and brought new symptoms with it." Now every time I go out in the heat my whole face and head start to tingle followed by my limbs. The fatigue in face of the heat is almost insurmountable. I have more slurred or slow speech, but not enough that anyone seems to notice it aside from myself, Too much time exercising does me in (and I am otherwise apparently healthy), some days muscles feel too stiff to exert for anything without pain, other days they feel like jello, some days I notice when I am on my treadmill I can not stay in a straight line, I have short term memory problems, trouble emptying my bladder, and the occasional headaches are back with what feels like lightning traveling in my body. The idea of MS did not really register with me until my MRI came back with 4 lesions in the periventricular white matter. A lumbar puncture was ordered and came back high in Albumin (39.7 mg/dl *range is14 - 25*) and elevated CSF protein 52mg/dl *range 15-45* and no oligoclonal bands. The neurologist reviewed it and said LP was 100% definitive answer and no bands means no MS. She was ready to send me home, but I was visibly upset. She said, "Most people are happy when I tell them they don't have MS!" I said, I just hoped you'd give me more direction. I've been sick off and on for 6 years and there are lesions on my brain, MS or not I'd hoped you'd give me a direction to go on. I am sick of making excuses for being sick. I'm sick of being sick. When I said I wanted a second opinion from another facility on my MRI, she said, "Well hold on, let me go look at your MRI again, on the bigger screen, and let me ask my colleague he specializes in MS." A few minutes later they are both in the room he says what he sees on my MRI is concerning and he can not rule out MS based on the negative results of the LP. He would like to use an MRI more suited to the specific needs of an MS study (It is a much stronger MRI) and do an examination of the spine as well as an exam of the eyes.
Hindsight is my new best friend and my new best friend tells me this was ANYTHING but brief. Apologies to anyone who feels cheated at my attempt to be "brief", but much thankfulness to anyone who managed to follow my drivel to completion, and more so to anyone who reaches out in any response regarding the following question/s:
Is it possible to reach a dx with a negative LP results? I first received an MRI on a lesser machine (T2?), discovered lesions, (I have 4 PWM lesions) if I move on to a better MRI machine (T7?) what are the chances of getting more accurate information? Can someone be diagnosed by lesions and symptoms alone? How common is it to be diagnosed using specialized eye exam in conjunction with MRI?
**I refused my own right/responsibility to spell/grammar check as I am exhausted from writing and research. Thank you for your understanding and thank you, in advance, for your thoughtful responses.
Also if you are having symptoms like pain or dizziness you can ask for treatment. It will not interfere with the diagnosis.In MS we get medication for neurological pain or muscle spasms or both.
Alex
Alex
When I was diagnosed I had a visual evoke potential test done. It was the only test that came back normal.
My MRI's of my brain and spine had lesions and more appeared three months later, and all tests my specialist performed on my body were abnormal.
I never had a lumbar puncture done as it was not necessary. I don't know if others generally have a normal EVP or what the odds tend to be. I just that I would mention that to you :)
Good luck with everything and I hope you get answers soon.
Barb
My MRI's of my brain and spine had lesions and more appeared three months later, and all tests my specialist performed on my body were abnormal.
I never had a lumbar puncture done as it was not necessary. I don't know if others generally have a normal EVP or what the odds tend to be. I just that I would mention that to you :)
Good luck with everything and I hope you get answers soon.
Barb
I just reread your comment and I failed to respond to an important part, I am sorry. The only test performed by the neuro was the reflex test, running a qtip across various places on my body to make sure I still had feeling, and tested various muscles to see if I could "pushback" are these the tests you are referring to?
As I said hindsight is my new best friend, and, in hindsight, I suppose if I could not stand to proofread it, I should have known. It's awful, I am sorry. Thank you for your helpful response. I found out it is a 7t mri, because there is one not too far from me, but the DR who put in the request is not sure how long it will be before I am seen.
I am open to it being nearly anything so long as they can identify it and hopefully alleviate some (more preferably most/all) of my symptoms.
I also found out the eye test is the visual evoked potentials which leaves me again with more questions about the odds they will be able to give me answers.
Thank you for your response! :-)
I am open to it being nearly anything so long as they can identify it and hopefully alleviate some (more preferably most/all) of my symptoms.
I also found out the eye test is the visual evoked potentials which leaves me again with more questions about the odds they will be able to give me answers.
Thank you for your response! :-)
I am sorry for the duration of your journey to diagnosis, but I appreciate your sharing. I apologize for the lack of paragraphs, I should have considered the fact that I couldn't stand to proof read it myself, afterwards should have been a red flag. Thank you :)
Thank you so much, and now that you mention it the lack of paragraphs is what kept me from feeling I could manage to proofread it. Also, it is a 7t MRI, the 2nd neuro I spoke with put in a request because there is one relatively near me, but does not know how long it will take before I can be seen.
COMMUNITY LEADER
Hi and welcome to our little MS community,
I agree with Imm "it's not the length, it's the lack of paragraphs".....it would be much appreciated if you brake up your posts for those of us with visual and or cognitive issues....ta
Admittedly it wasn't easy reading but a few things stood out to me....your elevated protein of 52 is abnormal and abnormal protein level in the CSF can be suggestive of a problem in the central nervous system, it also can suggest spine or spinal cord disorders, and as you've also mentioned a couple of 'symptoms' that may also indicate spinal eg trouble emptying your bladder and lightning travelling in your body, I'd definitely think a spinal MRI is warranted under the circumstances.
Having both elevated Albumin and Protein from my understanding is indicating that there's infection or inflammation but please keep in mind there are many medical condition or possible explanations, so whilst it's definitely meaningful, it doesn't point to anything specific....
In regards to the MS specialising neuro ordering a higher strength MRI, technically the thinner the slice and or the higher the strength MRI is, it's expected to show approx 25% more than a standard 1.5T. It's more likely the MRI will be a 3T because 7T's are generally used for research and not readily accessible to patient diagnostic work.
I would highly recommend you do try to keep open minded as to what is causing your 'symptoms', without mentioning any neurologically abnormal clinical signs, i personally wouldn't of thought MS was the most likely causation based on the recurrence commonality of dizziness, vomiting, fatigue and headaches, with the additional extended time frames (2001-2009, 2012, 1214) that you didn't experience a distinctive episode and or temporary return or worsening of prior sx's.
Cheers..........JJ
I agree with Imm "it's not the length, it's the lack of paragraphs".....it would be much appreciated if you brake up your posts for those of us with visual and or cognitive issues....ta
Admittedly it wasn't easy reading but a few things stood out to me....your elevated protein of 52 is abnormal and abnormal protein level in the CSF can be suggestive of a problem in the central nervous system, it also can suggest spine or spinal cord disorders, and as you've also mentioned a couple of 'symptoms' that may also indicate spinal eg trouble emptying your bladder and lightning travelling in your body, I'd definitely think a spinal MRI is warranted under the circumstances.
Having both elevated Albumin and Protein from my understanding is indicating that there's infection or inflammation but please keep in mind there are many medical condition or possible explanations, so whilst it's definitely meaningful, it doesn't point to anything specific....
In regards to the MS specialising neuro ordering a higher strength MRI, technically the thinner the slice and or the higher the strength MRI is, it's expected to show approx 25% more than a standard 1.5T. It's more likely the MRI will be a 3T because 7T's are generally used for research and not readily accessible to patient diagnostic work.
I would highly recommend you do try to keep open minded as to what is causing your 'symptoms', without mentioning any neurologically abnormal clinical signs, i personally wouldn't of thought MS was the most likely causation based on the recurrence commonality of dizziness, vomiting, fatigue and headaches, with the additional extended time frames (2001-2009, 2012, 1214) that you didn't experience a distinctive episode and or temporary return or worsening of prior sx's.
Cheers..........JJ
To a neurologist the previous six years does not count they want to see symptoms change for themselves. I had documented neurological problems for 40 years but I started at day one when I saw the first neurologist who said MS. It took two years of being followed with five MRIs showing classic MS. Six neurologists saying it has to be MS but none willing to diagnose it. Very few people are diagnosed quickly. It usually takes years for a diagnosis. All my neurologists now say I have had MS since the age of two yet I was not diagnosed until 44. Neurologists knew there was something wrong just not what. It took me 4 years to be diagnosed with cancer.
With neurologists what you say happened in the past is like heresay in court. To them it has to be proved. It helps but they want to see for themselves. They usually follow you every three to six months for years. They want to see changes in your neurological exam. A neurological exam is more accurate than a MRI. MRis show lesions which could be many things. MRIs are like looking at shadows not the real thing. The only way to look at real MS lesions is on autopsy.
Most of us are diagnosed on 1.3 tesla Machines. There are 3T out there at larger Universities. There are 7Ts but they are research. Besides MRIs on different strength machines cannot be compared so it is starting over again. The computer program used called the MS protocol is more important.
Neurologists specialize so it is important to go to a MS Specialist. There are fewer neurologists who specialize in MS so it can take months to get in.
In the end it is the neurologist who decides whether it is MS or not. All my tests including the LP showed MS. I had 12 o-bands. I had damage for 40 years and nothing changed. My symptoms stayed the same. My MRIs year after year are identical. Finally they realized all my damage took place in the 1960's. I have a kind of MS that does not relapse and remit.
Many of us with MS can't read a big block of print. I had to start over several times.
Alex
No test rules MS in or out. You can look up something called the McDonald Criteria which explains how MS is diagnosed.
With neurologists what you say happened in the past is like heresay in court. To them it has to be proved. It helps but they want to see for themselves. They usually follow you every three to six months for years. They want to see changes in your neurological exam. A neurological exam is more accurate than a MRI. MRis show lesions which could be many things. MRIs are like looking at shadows not the real thing. The only way to look at real MS lesions is on autopsy.
Most of us are diagnosed on 1.3 tesla Machines. There are 3T out there at larger Universities. There are 7Ts but they are research. Besides MRIs on different strength machines cannot be compared so it is starting over again. The computer program used called the MS protocol is more important.
Neurologists specialize so it is important to go to a MS Specialist. There are fewer neurologists who specialize in MS so it can take months to get in.
In the end it is the neurologist who decides whether it is MS or not. All my tests including the LP showed MS. I had 12 o-bands. I had damage for 40 years and nothing changed. My symptoms stayed the same. My MRIs year after year are identical. Finally they realized all my damage took place in the 1960's. I have a kind of MS that does not relapse and remit.
Many of us with MS can't read a big block of print. I had to start over several times.
Alex
No test rules MS in or out. You can look up something called the McDonald Criteria which explains how MS is diagnosed.
For me, it's not the length, it's the lack of paragraphs. A lot of us here have problems following along with large blocks of text due to vision or attention/comprehension issues.
But I did make it! First off, ditch your neuro. Anyone who thinks a clean LP rules MS out doesn't know what they're talking about. It merely adds to the evidence, but doesn't clinch anything, positive or negative.
This second neuro sounds more promising, even better if he's a specialist. An MRI done to MS protocol is a good next step for you. A lot can go into the quality of MRI results to echo Kyle; the Tesla strength (1.5T, 3T or 7T in the experimental variety), the software used to formulate the images, the talent of the radiologist who views it and writes the initial report, the protocol used (the thickness of the "slices" in the case of MS), and the level of cop on the neurologist has when looking at the results.
But all of that aside, you don't mention your neurological exam results. Have you had one? Those are of paramount diagnostic importance and can give a specialist boat-loads of information. Things like a positive Babinski response or Rhomberg's test is almost as valuable as an MRI (and a LOT faster and cheaper). A good neurologist won't rely solely on one result (like an LP) to the expense of others.
But I did make it! First off, ditch your neuro. Anyone who thinks a clean LP rules MS out doesn't know what they're talking about. It merely adds to the evidence, but doesn't clinch anything, positive or negative.
This second neuro sounds more promising, even better if he's a specialist. An MRI done to MS protocol is a good next step for you. A lot can go into the quality of MRI results to echo Kyle; the Tesla strength (1.5T, 3T or 7T in the experimental variety), the software used to formulate the images, the talent of the radiologist who views it and writes the initial report, the protocol used (the thickness of the "slices" in the case of MS), and the level of cop on the neurologist has when looking at the results.
But all of that aside, you don't mention your neurological exam results. Have you had one? Those are of paramount diagnostic importance and can give a specialist boat-loads of information. Things like a positive Babinski response or Rhomberg's test is almost as valuable as an MRI (and a LOT faster and cheaper). A good neurologist won't rely solely on one result (like an LP) to the expense of others.
Also, if I hadn't taken the time to write it. I'm not sure I'd of had the patience to read it either! ;-)
Thank you for the information! I guess I don't know enough about the strengths of the MRI, just that this DR said there is one in our neighboring city 5 times stronger than the one used for my initial MRI. Hopefully, since I already know the LP did not produce oligoclonal bands, they will be able to get enough information from the better MRI, to either diagnose me with MS or send me in any accurate direction.
Thank you for your sympathy, I am both saddened and glad to know I am not alone. I do think however, (based on the fact that she was willing to let me leave the room not in the least bit curious why a 37 year old would have symptoms and lesions) that I will meet with her colleague in the future rather than see her again!
Yes, your can be Dx'd with a negative LP. Many are DX'd with no LP. As to the MRI, without contrast it is not possible to DX based on a single study. I I admit, I didn't read the whole post).
The strength of the machine is a factor, but so is the type of study done.Macine strengths are usually 1.5T or 3T. 3T is the strongest currently available. MS protocol uses very thin 'slices' which makes it more likely to find lesions.
Kyle
The strength of the machine is a factor, but so is the type of study done.Macine strengths are usually 1.5T or 3T. 3T is the strongest currently available. MS protocol uses very thin 'slices' which makes it more likely to find lesions.
Kyle
In theory it is possible, however my neurologist has said
the same thing. After following me for 2 years he was ready to DX based on lesions and clinical; he requested an LP which was fine. Same comment "you should be happy it's not ms."
So no wisdom here, sorry, but ((hugs)) you're not
The only one!
the same thing. After following me for 2 years he was ready to DX based on lesions and clinical; he requested an LP which was fine. Same comment "you should be happy it's not ms."
So no wisdom here, sorry, but ((hugs)) you're not
The only one!
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