Aa
How long is too long to wait?
After a eyar and a half of strangeness with my head and eye I was finally referred to a neuro-opthalmologist who sent me for an MRI which showed lesions (one particularly large on in the frontal left lobe) so he ordered a spinal tap to test for the oligoclonal bands to see if it's multiple sclerosis.
The spinal tap was done April 28. I was told the results would be in in about 5 (business) days ... it's now been 8.
I called his office yesterday and his secretary said he was planning to call me when he finished seeing patients. He never did.
I called this morning and the recording said they were out of the office today - so I am facing another weekend of not knowing.
Is it unusual for the results to take this long to come back?
Am I making too much out of this?
I'm already scared and it is just heightening my anxiety to not know and not be able to reach anyone.
Thanks
The spinal tap was done April 28. I was told the results would be in in about 5 (business) days ... it's now been 8.
I called his office yesterday and his secretary said he was planning to call me when he finished seeing patients. He never did.
I called this morning and the recording said they were out of the office today - so I am facing another weekend of not knowing.
Is it unusual for the results to take this long to come back?
Am I making too much out of this?
I'm already scared and it is just heightening my anxiety to not know and not be able to reach anyone.
Thanks
I'm a bit confused now.
I've read through the health pages and I've Googled more information on the mimics and I feel confident that I can ask my doctor some better informed questions - but I do have one giant question now.
B12 deficiency is listed as an MS mimic -- but research also shows a clear link (apparently) between the presence of MS and lack of B12. I found several studies (some rather old) showing that better than 90% of people with MS are also found to be B12 deficient and B12 is necessary for myelin production.
So, does this mean it's more likely to BE MS because I know I'm B12 deficient or can I still hold out hope that it may be just a vitamin problem that I can work on?
That one is stumping me.
Is anyone else here B12 deficient and, if so, what do you advise?
I've read through the health pages and I've Googled more information on the mimics and I feel confident that I can ask my doctor some better informed questions - but I do have one giant question now.
B12 deficiency is listed as an MS mimic -- but research also shows a clear link (apparently) between the presence of MS and lack of B12. I found several studies (some rather old) showing that better than 90% of people with MS are also found to be B12 deficient and B12 is necessary for myelin production.
So, does this mean it's more likely to BE MS because I know I'm B12 deficient or can I still hold out hope that it may be just a vitamin problem that I can work on?
That one is stumping me.
Is anyone else here B12 deficient and, if so, what do you advise?
What is truly interesting about those is that I had a blood test last year that showed my B12 level was 221, which I was told was very low ... wow, maybe it IS actually a vitamin deficiency!!!
I'm going to read more ... but this has brought THE biggest smile to my face!!
I'm going to read more ... but this has brought THE biggest smile to my face!!
Please take time to read our Health Pages (upper right), especially http://www.medhelp.org/health_pages/Multiple%20Sclerosis/MS-Mimics---Part-I/show/375?cid=36
Also see the entry on blood tests. You need much more basic info than you have thus far.
Good luck,
ess
Also see the entry on blood tests. You need much more basic info than you have thus far.
Good luck,
ess
The referral was my fault.
My dad was pushing for me to see a specialist for a long time but I thought my primary knew the way to go and stuck with his suggestions.
I should have listened to him sooner though. In three visits to Bascom Palmer I've learned more than I did in the past year and a half with everyone else!
The neuro-opthalmologist did a neuro exam when I saw him the second time. The first was basically to look at the other tests I'd had done and do some eye exam stuff (pressures, dilation, etc). Before he did that (watched me walk, did strength testing, reflexes and so on) no one had done that. Nope.
He did say my reflexes and strength were good, except that my eye reflexes were slow and my right ankle was weaker than my left. Other than that, I think I did pretty well on that exam :)
On the MS mimics -- no one has done any testing for that. In fact, no one has mentioned anything about it at all! Should they have? Should I ask about that?
What other things could it possibly be? This give me hope!!
My dad was pushing for me to see a specialist for a long time but I thought my primary knew the way to go and stuck with his suggestions.
I should have listened to him sooner though. In three visits to Bascom Palmer I've learned more than I did in the past year and a half with everyone else!
The neuro-opthalmologist did a neuro exam when I saw him the second time. The first was basically to look at the other tests I'd had done and do some eye exam stuff (pressures, dilation, etc). Before he did that (watched me walk, did strength testing, reflexes and so on) no one had done that. Nope.
He did say my reflexes and strength were good, except that my eye reflexes were slow and my right ankle was weaker than my left. Other than that, I think I did pretty well on that exam :)
On the MS mimics -- no one has done any testing for that. In fact, no one has mentioned anything about it at all! Should they have? Should I ask about that?
What other things could it possibly be? This give me hope!!
Well now, I can see that you've been through the mill. I'm surprised that you weren't referred for eye evaluation long before you were, considering what you describe is classic nystagmus, and especially considering your dad is an ophth!
Then you had what you must now know is a classic MS remission. Your subsequent brain MRI sounds pretty classic too. But I do see some omissions on this journey of yours. Have you ever had a full neuro examination? You'd know, because that can take at least half an hour, and often is nearly an hour. This is important to evaluate strength, reflexes and balance, and also to test for odd reactions to stimuli.
Also, where are the other tests to rule out MS mimics? A lot of diseases present like MS, but only MS is MS.
I think you should be asking questions about these and not worrying about the LP, which is *not* definitive. If some doc thinks it is and then withholds a diagnosis, that will be your cue to take all your test results and find a better neuro, ASAP.
Best of luck and keep us posted.
ess
Then you had what you must now know is a classic MS remission. Your subsequent brain MRI sounds pretty classic too. But I do see some omissions on this journey of yours. Have you ever had a full neuro examination? You'd know, because that can take at least half an hour, and often is nearly an hour. This is important to evaluate strength, reflexes and balance, and also to test for odd reactions to stimuli.
Also, where are the other tests to rule out MS mimics? A lot of diseases present like MS, but only MS is MS.
I think you should be asking questions about these and not worrying about the LP, which is *not* definitive. If some doc thinks it is and then withholds a diagnosis, that will be your cue to take all your test results and find a better neuro, ASAP.
Best of luck and keep us posted.
ess
Thank you all for your comments -- they REALLY help ease my mind on this.
For Quixotic1 -- it's been a strange series of events that have gotten me here.
About a year and a half ago I began having problems with my vision. Not double vision or blurred vision or anything like that. It was literally as though something inside my head was shaking all over the place and I would be unable to focus on anything for anywhere from a few seconds to a few hours (or more). For example, if you were standing in front of me -- I could see you - the general shape of you -- but I wouldn't be able to, say, focus in on your nose or your eyes or any particular feature because my eyes just wouldn't cooperate.
My primary thought it was related to high blood pressure, which runs in my family. My mother was about my age (39) when she began having blood pressure issues. So he sent me for heart testing (ekg, holter monitor, cardiac catheter, etc.) and it all came back pretty normal.
He is still convinced (my primary) that it's blood-pressure related but he did send me for a CT scan last year. It didn't show anything.
He then sent me for the nystagmography testing, thinking maybe it was vertigo, even though I wasn't experiencing dizziness. To me -- dizzy is when things seem like they're spinning around you. My problem was that the spinning was all INSIDE my head, not around me.
But I did the testing and passed with flying colors - no vertigo!
So, I'm not unhappy -- we're ruling things out :)
Heart seems good. No vertigo -- cool beans!
All of this testing back and forth has been going on for over a year at this point - during which time two new 'things' developed.
One new 'thing' is that, during the night while I'm sleeping, my eyes will pull as far as they can to one side (usually the right) and hold there - which hurts like the dickens and wakes me up. That's when the 'inside head' shakes start and I can't go back to sleep.
My eyes feel like they are just little jumping beans in there!
My primary didn't know what to do with that one. And, in all honesty, I do believe he thought I was a bit batty. Not that I could blame him -- I've been thinking I was going crazy too because no one else can see this but me!
The other new 'thing' is numbness in my left arm and lower lip (always together, one doesn't go screwy alone). It feels like I could drive a nail through it and not feel it (but I'm not testing that theory!).
Then, like a GIFT, a few months passed with nothing. NO vision or head problems at all. I thought -- IT'S OVER! YAY!
But one day in January I woke up with the eye pain and the vision didn't clear for almost 11 hours. It was awful - frustrating to infinity!
There is absolutely no control over it and no idea when it's going to happen or for how long.
So all this while, I'd been talking with my dad, who is an opthalmologist, about this problem and he'd been suggesting I see a neuro-opthalmologist.
I had dismissed it, thinking my primary had a route planned we should follow it - but my dad was getting more insistent so, at his suggestion, I asked for the referral to someone as Bascom Palmer.
I brought my films and records to my first visit and, after telling me why the CT was 'useless' and wondering why it had been ordered given my symptoms (and didn't THAT make me feel stupid!) they sent me for an MRI.
The MRI showed (and I'm typing this from the report):
"abnormal areas of prolonged T2 signal in the periventricular white matter, and accentuated in the subcortical matter of the posterior temporal lobes bilaterally, the supraventriclar regions and the left frontal lobe. In a patient of this age, the possibility of demyelinating disease needs to be considered. MS would be the most likely candidate."
The CD showed it pretty well -- and in sequence of every picture you could see them and there were some other, smaller dots that 'may or may not' be cause for concern - but the big one is "a 1.2 cm lesion in the frontal left lobe identified in a subcortical gyral distribution". No idea what that means except that you can see this rather large blobby thing right there. No mistaking that it's something that doesn't belong.
Just looking at it made me want to cry.
The neuro-opthalomologist was very matter-of-fact about the MS part.
He said 'I think you have MS' and I said 'Wait -- so in the pantheon of candidates of what this may possibly be - MS is one of them?' and he said 'No, I'm saying I think it's MS. We'll do a spinal tap to be sure.'
My dad offered to ask for a second opinion from some folks at the hospital where he work, so I overnighted a copy of the CD and report to him. Both of the doctors he asked agreed with my doctor - so that was not encouraging but I very much appreciated them taking the time to give it a look.
The spinal tap was done April 28 and my doctor had said the results would take about 5 days so I was all prepared for news this week and definitely got 'inside my head' about it as the days passed - getting more worried and anxiety filled, which I know is completely counter-productive!
I am very relieved to know it's not abnormal for the results to take a while. I was beginning to think something had gone wrong (or they lost my CSF vials or something) - that whole 'inside my head' thing again ;)
I just keep thinking that maybe it's a protein deficiency or vitamin problem or something. I know I'm probably grasping with that but, in truth, MS scares me silly!
For Quixotic1 -- it's been a strange series of events that have gotten me here.
About a year and a half ago I began having problems with my vision. Not double vision or blurred vision or anything like that. It was literally as though something inside my head was shaking all over the place and I would be unable to focus on anything for anywhere from a few seconds to a few hours (or more). For example, if you were standing in front of me -- I could see you - the general shape of you -- but I wouldn't be able to, say, focus in on your nose or your eyes or any particular feature because my eyes just wouldn't cooperate.
My primary thought it was related to high blood pressure, which runs in my family. My mother was about my age (39) when she began having blood pressure issues. So he sent me for heart testing (ekg, holter monitor, cardiac catheter, etc.) and it all came back pretty normal.
He is still convinced (my primary) that it's blood-pressure related but he did send me for a CT scan last year. It didn't show anything.
He then sent me for the nystagmography testing, thinking maybe it was vertigo, even though I wasn't experiencing dizziness. To me -- dizzy is when things seem like they're spinning around you. My problem was that the spinning was all INSIDE my head, not around me.
But I did the testing and passed with flying colors - no vertigo!
So, I'm not unhappy -- we're ruling things out :)
Heart seems good. No vertigo -- cool beans!
All of this testing back and forth has been going on for over a year at this point - during which time two new 'things' developed.
One new 'thing' is that, during the night while I'm sleeping, my eyes will pull as far as they can to one side (usually the right) and hold there - which hurts like the dickens and wakes me up. That's when the 'inside head' shakes start and I can't go back to sleep.
My eyes feel like they are just little jumping beans in there!
My primary didn't know what to do with that one. And, in all honesty, I do believe he thought I was a bit batty. Not that I could blame him -- I've been thinking I was going crazy too because no one else can see this but me!
The other new 'thing' is numbness in my left arm and lower lip (always together, one doesn't go screwy alone). It feels like I could drive a nail through it and not feel it (but I'm not testing that theory!).
Then, like a GIFT, a few months passed with nothing. NO vision or head problems at all. I thought -- IT'S OVER! YAY!
But one day in January I woke up with the eye pain and the vision didn't clear for almost 11 hours. It was awful - frustrating to infinity!
There is absolutely no control over it and no idea when it's going to happen or for how long.
So all this while, I'd been talking with my dad, who is an opthalmologist, about this problem and he'd been suggesting I see a neuro-opthalmologist.
I had dismissed it, thinking my primary had a route planned we should follow it - but my dad was getting more insistent so, at his suggestion, I asked for the referral to someone as Bascom Palmer.
I brought my films and records to my first visit and, after telling me why the CT was 'useless' and wondering why it had been ordered given my symptoms (and didn't THAT make me feel stupid!) they sent me for an MRI.
The MRI showed (and I'm typing this from the report):
"abnormal areas of prolonged T2 signal in the periventricular white matter, and accentuated in the subcortical matter of the posterior temporal lobes bilaterally, the supraventriclar regions and the left frontal lobe. In a patient of this age, the possibility of demyelinating disease needs to be considered. MS would be the most likely candidate."
The CD showed it pretty well -- and in sequence of every picture you could see them and there were some other, smaller dots that 'may or may not' be cause for concern - but the big one is "a 1.2 cm lesion in the frontal left lobe identified in a subcortical gyral distribution". No idea what that means except that you can see this rather large blobby thing right there. No mistaking that it's something that doesn't belong.
Just looking at it made me want to cry.
The neuro-opthalomologist was very matter-of-fact about the MS part.
He said 'I think you have MS' and I said 'Wait -- so in the pantheon of candidates of what this may possibly be - MS is one of them?' and he said 'No, I'm saying I think it's MS. We'll do a spinal tap to be sure.'
My dad offered to ask for a second opinion from some folks at the hospital where he work, so I overnighted a copy of the CD and report to him. Both of the doctors he asked agreed with my doctor - so that was not encouraging but I very much appreciated them taking the time to give it a look.
The spinal tap was done April 28 and my doctor had said the results would take about 5 days so I was all prepared for news this week and definitely got 'inside my head' about it as the days passed - getting more worried and anxiety filled, which I know is completely counter-productive!
I am very relieved to know it's not abnormal for the results to take a while. I was beginning to think something had gone wrong (or they lost my CSF vials or something) - that whole 'inside my head' thing again ;)
I just keep thinking that maybe it's a protein deficiency or vitamin problem or something. I know I'm probably grasping with that but, in truth, MS scares me silly!
Hi, and another welcome to the forum.
You have already recieved some good advice. The really important part of the LP is the IgG Index and the O-Bands. These are more specialty tests and may take more like two weeks to come back. they are the kind of test that some labs only run once a week and it depends on what day you had your LP whether it is run quickly or is delayed several days. Many labs send the CSF to labs across the country to be run, often to the Mayo Clinic in Rochester.
Give the results 2 to 4 weeks no matter what the doctor's office said,
About withholding belief that this is MS until the results of the LP are in. There is NO need for the LP to be abnormal for a certain diagnosis of MS to be made. In fact, there is no requirement that an LP be done at all to make the diagnosis. The LP is only helpful when it is positive. A negative LP does NOT ever negate the other clinical and MRI findings.
So, there is nothing that the LP shows that should change your mind if the neuro has already diagnosed MS. It is true that some neuros reject the diagnosis of MS if the LP is negative, but there is nothing in the MS science that supports this, most importantly not the McDonald Diagnostic Criteria.
Welcome. Why don't you tell us all that you have been through?
Quix
You have already recieved some good advice. The really important part of the LP is the IgG Index and the O-Bands. These are more specialty tests and may take more like two weeks to come back. they are the kind of test that some labs only run once a week and it depends on what day you had your LP whether it is run quickly or is delayed several days. Many labs send the CSF to labs across the country to be run, often to the Mayo Clinic in Rochester.
Give the results 2 to 4 weeks no matter what the doctor's office said,
About withholding belief that this is MS until the results of the LP are in. There is NO need for the LP to be abnormal for a certain diagnosis of MS to be made. In fact, there is no requirement that an LP be done at all to make the diagnosis. The LP is only helpful when it is positive. A negative LP does NOT ever negate the other clinical and MRI findings.
So, there is nothing that the LP shows that should change your mind if the neuro has already diagnosed MS. It is true that some neuros reject the diagnosis of MS if the LP is negative, but there is nothing in the MS science that supports this, most importantly not the McDonald Diagnostic Criteria.
Welcome. Why don't you tell us all that you have been through?
Quix
I think the test for oligoclonal bands (which is what they look for in MS) takes longer than five days to come back usually, but I can't imagine why it would take a whole month. And, like Ess said, a negative LP is really no evidence that you don't have MS.
sho
sho
Hi, and welcome.
Please don't place such reliance on possible outcomes of your LP testing. It is not a deal-breaker in MS, either way, though if it's positive you are likely to be diagnosed faster.
If your neuro is 'quite certain' it's MS, then you have MS. Why he's waiting I don't know. Be prepared to talk about DMDs at your next appt.
Best of luck,
ess
Please don't place such reliance on possible outcomes of your LP testing. It is not a deal-breaker in MS, either way, though if it's positive you are likely to be diagnosed faster.
If your neuro is 'quite certain' it's MS, then you have MS. Why he's waiting I don't know. Be prepared to talk about DMDs at your next appt.
Best of luck,
ess
yes, it's not fun waiting... when your in Limboland the waiting can be forever...just hang in there... alot of us have been waiting for a few years or more... your not alone and let hope that you get answers when these results come in....
take care
wobbly
undx
take care
wobbly
undx
Oh wow -- his secretary just told me the full report will take more than a month.
I wonder why he told us 5 days??
I guess I better get used to waiting!!
I wonder why he told us 5 days??
I guess I better get used to waiting!!
Hi, if your doctor's office doesn't respond, you could always go in, fill out a request of information form and request the report on your LP. I'm sure your doctor would want to talk to you about the results in person, and would try to do so before you got your copy of the results from your LP.
It's a good idea to request copies of all your lab test, procedures, etc.
Health Pages, lab tests online, and reading other people's posts are a great way to keep occupied when you're waiting for results. So is going for a walk, having lunch with a friend, cooking a good dinner, etc.
Take care!
Kathy
It's a good idea to request copies of all your lab test, procedures, etc.
Health Pages, lab tests online, and reading other people's posts are a great way to keep occupied when you're waiting for results. So is going for a walk, having lunch with a friend, cooking a good dinner, etc.
Take care!
Kathy
Thank you!
They didn't give me any supplemental materials - I wish they had. My tests have been done at Bascom Palmer in Miami ... but I will definitely check out lab tests online though -- at least that will help me occupy the time!
They didn't give me any supplemental materials - I wish they had. My tests have been done at Bascom Palmer in Miami ... but I will definitely check out lab tests online though -- at least that will help me occupy the time!
They take the blood to compare with your spinal fluid. They measure protens, glucose, red and white blood cells. They compute an index of IGg between the two, and if it's too high, that indicates MS. They are also looking for o-bands that are in your CSF and not your blood (or vice-versa, I really don't remember). If you haven't had all the other stuff measured yet, like B12, Sed Rate, CRP, and NMO, they might be taking extra blood to do those in addition. But, there's always blood taking with the spinal fluid when investigating MS.
You can look up "lab tests on line" in a search engine, and there are several sites that will explain what this all is. I know mine were done by Mayo labs, and they put it all in a package called a "Multiple Sclerosis Profile" Something to occupy you for the weekend, perhaps?
I'm sorry, the waiting is awful, isn't it? In the meantime, check out some of the excellend Health Pages on this site, and use the search feature to find posts that relate to your questions.
You can look up "lab tests on line" in a search engine, and there are several sites that will explain what this all is. I know mine were done by Mayo labs, and they put it all in a package called a "Multiple Sclerosis Profile" Something to occupy you for the weekend, perhaps?
I'm sorry, the waiting is awful, isn't it? In the meantime, check out some of the excellend Health Pages on this site, and use the search feature to find posts that relate to your questions.
I forgot to mention that, although my doctor was quite certain it is MS, I am not accepting that until the spinal tap results come back.
In the meantime, they also drew a lot of blood in the lab after the spinal tap - does anyone have any idea what that might have been for? My husband and I thought it was part of the tap but now we're told it's not.
In the meantime, they also drew a lot of blood in the lab after the spinal tap - does anyone have any idea what that might have been for? My husband and I thought it was part of the tap but now we're told it's not.
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