slskckjebw
07-11-2007, 07:17 PM
I am new here. I saw the neurologist today. I went because I have ON and a couple of spots on my MRI. She felt the location and shape of the spots were not demyelination even though the radiology report says it "may represent actue demyelination ", so ok....
The doctor felt the spots are related to high bp.
I am on blood pressure meds for "mild" high bp, have been for years, my blood pressure has been well controlled. So, I am not sure what to think with that situation.
But since I have ON and other symptoms she wants to do a c-spine MRI, SER, BAER, and VER. She said last resort would be a Lp.
I do have to have a follow up brain MRI in 6 months because she is not 100% sure that the spots on my MRI are related to BP.
Boy do I feel like I have just stepped onto a huge roller coaster!!
I was ok earlier today, but I am feeling so frustrated now. I still can not see very well. I am MISERABLY tired. I am not sleeping well. I feel awful. I am having a hard time focusing in on anything, with my eyes AND my brain.
I know this could be something else. I had a bunch of blood tests drawn today. I should not complain. I have not had to ask or beg for anything. My ON has made everything happen without me having to say anything about my other symptoms.
I do think I did ok with the office neurological exam...I think any how. Except my right leg is noticably weaker than my left. I don't know I guess.
I didn't ask her how the exam went. Maybe it didn't go as well as I thought since she ordered these other test.
Anyway...can a person have MS with an dx of ON and a brain MRI that is not showing any specific MS lesions? Can lesions just show up on a c-spine? I thought I read that C-spine lesions cause more severe symtoms than brain lesions...is that correct?
I have symptoms, but nothing is totally numb. I can walk a straight line. I can touch my nose. I do have balance issues though, even though I can walk a straight line. I don't know what to think now.
She told me that they have to be careful with a person who has ON and test the c-spine because it could still be MS. Is that common? Would the doctor know more than the radiologist if the spots on my MRI were actue demyelination or bp related? I do not want to be on this ride...I was just going along minding my own business and then my eye went out on me!! UGH!!
L
The doctor felt the spots are related to high bp.
I am on blood pressure meds for "mild" high bp, have been for years, my blood pressure has been well controlled. So, I am not sure what to think with that situation.
But since I have ON and other symptoms she wants to do a c-spine MRI, SER, BAER, and VER. She said last resort would be a Lp.
I do have to have a follow up brain MRI in 6 months because she is not 100% sure that the spots on my MRI are related to BP.
Boy do I feel like I have just stepped onto a huge roller coaster!!
I was ok earlier today, but I am feeling so frustrated now. I still can not see very well. I am MISERABLY tired. I am not sleeping well. I feel awful. I am having a hard time focusing in on anything, with my eyes AND my brain.
I know this could be something else. I had a bunch of blood tests drawn today. I should not complain. I have not had to ask or beg for anything. My ON has made everything happen without me having to say anything about my other symptoms.
I do think I did ok with the office neurological exam...I think any how. Except my right leg is noticably weaker than my left. I don't know I guess.
I didn't ask her how the exam went. Maybe it didn't go as well as I thought since she ordered these other test.
Anyway...can a person have MS with an dx of ON and a brain MRI that is not showing any specific MS lesions? Can lesions just show up on a c-spine? I thought I read that C-spine lesions cause more severe symtoms than brain lesions...is that correct?
I have symptoms, but nothing is totally numb. I can walk a straight line. I can touch my nose. I do have balance issues though, even though I can walk a straight line. I don't know what to think now.
She told me that they have to be careful with a person who has ON and test the c-spine because it could still be MS. Is that common? Would the doctor know more than the radiologist if the spots on my MRI were actue demyelination or bp related? I do not want to be on this ride...I was just going along minding my own business and then my eye went out on me!! UGH!!
L
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duttin
07-11-2007, 07:50 PM
Welcome,
I agree know one wants the roller coaster ride of a DX to MS.
Your neuro is covering all the bases,which is a plus in your favor.
As far as the radiologist report,who's right or wrong depends on if the radiologist was a neuro radiologist or standard radiologist.I prefer my neuro to read the actual MRI films.
Most neuro's use the McDonalds criteria to say yes or no to MS.With ON and positive brain lesions yes , they can give a Dx.
Yes,lesions can show up in the C-spine,with that and ON they can confirm MS.
C-spine lesions and brain lesions ,how many and location can determine symptoms,disabilty and so forth.
Keep in mind MS is liveable,symptoms are treatable,but its not curable.
There will be others that will come by to welcome you and answer your questions.
I agree know one wants the roller coaster ride of a DX to MS.
Your neuro is covering all the bases,which is a plus in your favor.
As far as the radiologist report,who's right or wrong depends on if the radiologist was a neuro radiologist or standard radiologist.I prefer my neuro to read the actual MRI films.
Most neuro's use the McDonalds criteria to say yes or no to MS.With ON and positive brain lesions yes , they can give a Dx.
Yes,lesions can show up in the C-spine,with that and ON they can confirm MS.
C-spine lesions and brain lesions ,how many and location can determine symptoms,disabilty and so forth.
Keep in mind MS is liveable,symptoms are treatable,but its not curable.
There will be others that will come by to welcome you and answer your questions.
Bearygood
07-11-2007, 10:04 PM
Hi, slskckjebw! :wave:
As nuffs implied, the films are often only as good as the person who's reading them. The thing that makes me frustrated right along with you is the "iffiness" of the high BP suspicion. And well, there is that ON...
Anyway, hang in there -- I know it seems like it's been forever but in the absence of a clear dx, so many in your shoes have had to pull teeth to get someone to listen to them and do additional testing so in that sense you are very fortunate. If the additional tests don't show anything conclusive you might want to ask the neuro if it might be a good idea to see an MS specialist to make sure or even just seek a second opinion with a different neuro on your own accord. :)
As nuffs implied, the films are often only as good as the person who's reading them. The thing that makes me frustrated right along with you is the "iffiness" of the high BP suspicion. And well, there is that ON...
Anyway, hang in there -- I know it seems like it's been forever but in the absence of a clear dx, so many in your shoes have had to pull teeth to get someone to listen to them and do additional testing so in that sense you are very fortunate. If the additional tests don't show anything conclusive you might want to ask the neuro if it might be a good idea to see an MS specialist to make sure or even just seek a second opinion with a different neuro on your own accord. :)
aleajacta
07-12-2007, 05:54 AM
My sympathies! Took a similar ride about three weeks ago myself. Went in to university urgent care, thinking they'd tell me I had eye strain from staring into a binocular microscope too long. Walked out 6 hours later with a diagnosis of ON and a note telling me to see the first opthamologist, neuropthamologist, or neurologist I could tackle for an appointment. By that time next week I'd been to the neurology clinic twice, had blood taken twice, been given three IV steroid treatments, a stack of contrasting and non-contrasting MRI pics of my brain and c-spine, and, in the end, a diagnosis of MS.
In my case they found characteristic lesions in both the brain and spine, which, along with a few seemingly random things that shook out in my medical history was sufficient for a diagnosis. (They were looking for lesions of a certain shape in the periventricular region of the white matter, or around the big hole in the middle of it all. Also, they can inject a contrast agent which will light up actively demyelinating regions if they're looking for MS in particular.)
The new roller coaster is treatment. My insurance company seems to have left the tracks for that ride dangling into the ether, unfortunately.
It's possible, I believe, to have lesions in the spine without having them in the brain. Optic Neuritis can also be an acute demyelinating event that takes place in the absence of lesions anywhere, in which case they still may want to moniter you as ON can sometimes be the first symptom in people who later develop clinically defined MS. On the other hand, I'm told that in up to half the cases of ON, the cause is never identified and there is no relapse or further symptoms. (The exact percentage varies from review to review.)
The lesions in the spine are the ones responsible for the symptoms that involve the peripheral nervous system; sensory inputs (tingling/numbness) and motor control (muscle weakness). If I'm any indication, you can have them with pretty mild and largely sporadic symptoms. Despite them finding some there, I passed my neuro exam with no hitches.
Best of luck with everything! I'm still getting used to having been diagnosed, but at least having reached that point meant leaving behind the uncertainties of the diagnostic process.
In my case they found characteristic lesions in both the brain and spine, which, along with a few seemingly random things that shook out in my medical history was sufficient for a diagnosis. (They were looking for lesions of a certain shape in the periventricular region of the white matter, or around the big hole in the middle of it all. Also, they can inject a contrast agent which will light up actively demyelinating regions if they're looking for MS in particular.)
The new roller coaster is treatment. My insurance company seems to have left the tracks for that ride dangling into the ether, unfortunately.
It's possible, I believe, to have lesions in the spine without having them in the brain. Optic Neuritis can also be an acute demyelinating event that takes place in the absence of lesions anywhere, in which case they still may want to moniter you as ON can sometimes be the first symptom in people who later develop clinically defined MS. On the other hand, I'm told that in up to half the cases of ON, the cause is never identified and there is no relapse or further symptoms. (The exact percentage varies from review to review.)
The lesions in the spine are the ones responsible for the symptoms that involve the peripheral nervous system; sensory inputs (tingling/numbness) and motor control (muscle weakness). If I'm any indication, you can have them with pretty mild and largely sporadic symptoms. Despite them finding some there, I passed my neuro exam with no hitches.
Best of luck with everything! I'm still getting used to having been diagnosed, but at least having reached that point meant leaving behind the uncertainties of the diagnostic process.
slskckjebw
07-12-2007, 11:24 AM
Ok, that may be what is up with me then. I will have to wait and see of course. I have really funny sensations right now. Patches of tingles, numbness, and just funny things with my skin. I started having problems when my ON started. I actually thought my eye problem was gluacoma or a torn retina. I was shocked to hear ON. No one has started me on any treatment. I have asked.....but get no straight answer as to why not. I do not feel good at all. I am so frustrated right now. I am hoping my blood tests might show something. I should have a few of those back today.
The doctor asked if I have any bowel or bladder problems. I have always had bowel problems! I have been dx'd with IBS. I can't hold my fluids very well either. I didn't say too much about my other symptoms. I am hoping the test will show something...if there is something to show. It is frustrating. It seems like it has taken forever. Actualy I did start having my ON problems until the last part of May. So really it has not been that long
L
My sympathies! Took a similar ride about three weeks ago myself. Went in to university urgent care, thinking they'd tell me I had eye strain from staring into a binocular microscope too long. Walked out 6 hours later with a diagnosis of ON and a note telling me to see the first opthamologist, neuropthamologist, or neurologist I could tackle for an appointment. By that time next week I'd been to the neurology clinic twice, had blood taken twice, been given three IV steroid treatments, a stack of contrasting and non-contrasting MRI pics of my brain and c-spine, and, in the end, a diagnosis of MS.
In my case they found characteristic lesions in both the brain and spine, which, along with a few seemingly random things that shook out in my medical history was sufficient for a diagnosis. (They were looking for lesions of a certain shape in the periventricular region of the white matter, or around the big hole in the middle of it all. Also, they can inject a contrast agent which will light up actively demyelinating regions if they're looking for MS in particular.)
The new roller coaster is treatment. My insurance company seems to have left the tracks for that ride dangling into the ether, unfortunately.
It's possible, I believe, to have lesions in the spine without having them in the brain. Optic Neuritis can also be an acute demyelinating event that takes place in the absence of lesions anywhere, in which case they still may want to moniter you as ON can sometimes be the first symptom in people who later develop clinically defined MS. On the other hand, I'm told that in up to half the cases of ON, the cause is never identified and there is no relapse or further symptoms. (The exact percentage varies from review to review.)
The lesions in the spine are the ones responsible for the symptoms that involve the peripheral nervous system; sensory inputs (tingling/numbness) and motor control (muscle weakness). If I'm any indication, you can have them with pretty mild and largely sporadic symptoms. Despite them finding some there, I passed my neuro exam with no hitches.
Best of luck with everything! I'm still getting used to having been diagnosed, but at least having reached that point meant leaving behind the uncertainties of the diagnostic process.
The doctor asked if I have any bowel or bladder problems. I have always had bowel problems! I have been dx'd with IBS. I can't hold my fluids very well either. I didn't say too much about my other symptoms. I am hoping the test will show something...if there is something to show. It is frustrating. It seems like it has taken forever. Actualy I did start having my ON problems until the last part of May. So really it has not been that long
L
My sympathies! Took a similar ride about three weeks ago myself. Went in to university urgent care, thinking they'd tell me I had eye strain from staring into a binocular microscope too long. Walked out 6 hours later with a diagnosis of ON and a note telling me to see the first opthamologist, neuropthamologist, or neurologist I could tackle for an appointment. By that time next week I'd been to the neurology clinic twice, had blood taken twice, been given three IV steroid treatments, a stack of contrasting and non-contrasting MRI pics of my brain and c-spine, and, in the end, a diagnosis of MS.
In my case they found characteristic lesions in both the brain and spine, which, along with a few seemingly random things that shook out in my medical history was sufficient for a diagnosis. (They were looking for lesions of a certain shape in the periventricular region of the white matter, or around the big hole in the middle of it all. Also, they can inject a contrast agent which will light up actively demyelinating regions if they're looking for MS in particular.)
The new roller coaster is treatment. My insurance company seems to have left the tracks for that ride dangling into the ether, unfortunately.
It's possible, I believe, to have lesions in the spine without having them in the brain. Optic Neuritis can also be an acute demyelinating event that takes place in the absence of lesions anywhere, in which case they still may want to moniter you as ON can sometimes be the first symptom in people who later develop clinically defined MS. On the other hand, I'm told that in up to half the cases of ON, the cause is never identified and there is no relapse or further symptoms. (The exact percentage varies from review to review.)
The lesions in the spine are the ones responsible for the symptoms that involve the peripheral nervous system; sensory inputs (tingling/numbness) and motor control (muscle weakness). If I'm any indication, you can have them with pretty mild and largely sporadic symptoms. Despite them finding some there, I passed my neuro exam with no hitches.
Best of luck with everything! I'm still getting used to having been diagnosed, but at least having reached that point meant leaving behind the uncertainties of the diagnostic process.
Bearygood
07-12-2007, 12:39 PM
Welcome, aleajacta!
Just wanted to clarify that certain weaknesses and tingling can also occur in the absence of spinal lesions. As you said, it is possible to have MS related lesions on the c-spine even if none show in the brain, and also the t-spine. :)
Just wanted to clarify that certain weaknesses and tingling can also occur in the absence of spinal lesions. As you said, it is possible to have MS related lesions on the c-spine even if none show in the brain, and also the t-spine. :)
Weasel64
07-12-2007, 06:06 PM
I'm in a similar boat. I lost about half the vision in my left eye, and after a few days, I went to a college nurse to find out if I should seek medical advice. She thought it might be a detaching retina, so I went to an eye clinic. Retinal detachment and glaucoma were both ruled out, and a tentative optic neuritis diagnosis was given, pending MRI results.
I should know more on July 19, but during this time, I have done some research and determined that there were other symptoms that I didn't think much about. All of them did disappear over time, including numbness in one hand, migraines, and bipolar disorder.
One thing I have noticed is that I have been hyper-vigilant about how I'm doing. I now worry about balance and memory problems, for example, though surely those issues were there before and caused me no undue concern. I think it's easy to start ascribing all kinds of symptoms to MS out of fear and confusion. I'm trying to keep a lid on the panicky tendency to find symptoms in everything I do.
Regardless of how the MRI comes out, I will be asking for a referral to a neurologist because MRIs are not surefire all the time, as you have discovered. Lesions are not always clearly MS-related, and lack of lesions does not mean you don't have MS. I expect to be put through the same testing you're undergoing now. And I might not get any clear answers anyway. The thing is that the earlier treatment for MS begins, the better the outcome.
Keep pursuing it! And please keep us posted.
--Weasel
I should know more on July 19, but during this time, I have done some research and determined that there were other symptoms that I didn't think much about. All of them did disappear over time, including numbness in one hand, migraines, and bipolar disorder.
One thing I have noticed is that I have been hyper-vigilant about how I'm doing. I now worry about balance and memory problems, for example, though surely those issues were there before and caused me no undue concern. I think it's easy to start ascribing all kinds of symptoms to MS out of fear and confusion. I'm trying to keep a lid on the panicky tendency to find symptoms in everything I do.
Regardless of how the MRI comes out, I will be asking for a referral to a neurologist because MRIs are not surefire all the time, as you have discovered. Lesions are not always clearly MS-related, and lack of lesions does not mean you don't have MS. I expect to be put through the same testing you're undergoing now. And I might not get any clear answers anyway. The thing is that the earlier treatment for MS begins, the better the outcome.
Keep pursuing it! And please keep us posted.
--Weasel
aleajacta
07-14-2007, 03:30 AM
Thanks Bearygood, for the welcome and the info! I'm still very new to this (my background is molecular neuro, half a PhD completed, so the general mechanisms and terminology are not unfamiliar to me. The specifics of the disorder are. I've stared at many MRIs, but this was the first time the subject in question was myself...)
Weasel64, I hear you about the hypervigilance. For the first time I'm really noticing things which I've previously ignored (numbness in my hands, tingling in my feet, general feelings of discombobulation, ect.) Yet, now that suspect I know the implications they somehow suddenly seem *much* worse than they did when I wrote them off as too little sleep, too much coffee, and bad ergonomics.
I fell down the stairs and broke my wrist badly enough to need a titanium plate implanted at the beginning of the year (even this was a 'red flag' of sorts, as pointed out by my neurologist, although I'm stll not convinced it's connected) so my right wrist is already naturally stiff and a bit numb, exacerbating things further...
I tend to break up symptoms by afferent (sensory) vs efferent (motor) and I guess, because I did the premed hypochondria thing, I have tended not to believe the sensory symptoms as they are vague and transitory and qualitative in nature. The thing that convinced me was the latter; symptoms I could quantify that were completely involuntary. The biggest flag was frequency/urgency in needing to go to the bathroom, as it was something I knew I had no control over, and had never really thought of as anything larger than a urinary tract thing. The MRI ended up being a confirmation more than anything...
In any case, best of luck with everything! The thing that's been comforting through the diagnosis for me is realizing that nothing about ms is set in stone. The biggest stress has been related to insurance and the lack of coverage for treatment (which, ironically, every doctor I saw along the way made sure to comfortingly point out, was "available.") I hope that a clinical trial I'm trying to enroll in will be the saving grace in this respect.
Weasel64, I hear you about the hypervigilance. For the first time I'm really noticing things which I've previously ignored (numbness in my hands, tingling in my feet, general feelings of discombobulation, ect.) Yet, now that suspect I know the implications they somehow suddenly seem *much* worse than they did when I wrote them off as too little sleep, too much coffee, and bad ergonomics.
I fell down the stairs and broke my wrist badly enough to need a titanium plate implanted at the beginning of the year (even this was a 'red flag' of sorts, as pointed out by my neurologist, although I'm stll not convinced it's connected) so my right wrist is already naturally stiff and a bit numb, exacerbating things further...
I tend to break up symptoms by afferent (sensory) vs efferent (motor) and I guess, because I did the premed hypochondria thing, I have tended not to believe the sensory symptoms as they are vague and transitory and qualitative in nature. The thing that convinced me was the latter; symptoms I could quantify that were completely involuntary. The biggest flag was frequency/urgency in needing to go to the bathroom, as it was something I knew I had no control over, and had never really thought of as anything larger than a urinary tract thing. The MRI ended up being a confirmation more than anything...
In any case, best of luck with everything! The thing that's been comforting through the diagnosis for me is realizing that nothing about ms is set in stone. The biggest stress has been related to insurance and the lack of coverage for treatment (which, ironically, every doctor I saw along the way made sure to comfortingly point out, was "available.") I hope that a clinical trial I'm trying to enroll in will be the saving grace in this respect.
Lisa_P
07-16-2007, 06:10 PM
Be thankful for that barage of tests -- they are trying to rule everything else out. There is nothing that absolutely says MS to any doctor. Even after you've been diagnosed with MS (and I'm nervous about handing out hope, but MS is rarely dx'd as "definite MS"), they can still find a specific diagnosis for something else that IS later on. This is part of the value of an annual re-evaluation with an MS Specialist and, of course, research and clinical trials-- I think, I hope.