Aa
back from MS specialist
So I went to the MS dr. he looked over the MRI which is normal, did his neruo eval which he said is impecable...very normal, and he believes I do not have MS. He said the chances are less than 1 % because of my MRI and neuro eval, so I asked him what accounts for my symptoms of off balance, intermittent numbness in various places on my body, shaky hands, muscle twitching etc..and he said I dont know. He said I dont know what is causing this but Im fairly certain its not MS. Im having him do a Cspine MRI to make sure there is nothing there, but he really believes I dont have MS and is doing the cspine so I dont worry anymore. So my question..has anyone had a normal MRI and normal neruo eval and still been diagnosed with MS later on. Im still worried, but the dr I saw is an MS specialist and sees the disease all the time and said he doesnt think I have it...so what do you guys think?
That is a little tricky when you can't go see a new doctor without potentially upsetting someone you care about.
Actually, with primary progressive, what I've read is that there's a tendency to have less brain lesions and a higher likelihood of spinal lesions. But that's just a generality.
Anyway, two and a half months isn't really that long and if that's the only reason your neuro thinks you don't have MS, you need a new neuro. I saw my first neuro after five months of symptoms and he told me to go home and pray I didn't have MS so clearly he didn't think that was too long for the symptoms to go on. He did, however, think a clear MRI was 100% evidence against MS. And he's also semi-retired now--beware those doctors who haven't kept up with their field.
I guess sometimes you just have to be patient and wait for more evidence, though.
sho
Actually, with primary progressive, what I've read is that there's a tendency to have less brain lesions and a higher likelihood of spinal lesions. But that's just a generality.
Anyway, two and a half months isn't really that long and if that's the only reason your neuro thinks you don't have MS, you need a new neuro. I saw my first neuro after five months of symptoms and he told me to go home and pray I didn't have MS so clearly he didn't think that was too long for the symptoms to go on. He did, however, think a clear MRI was 100% evidence against MS. And he's also semi-retired now--beware those doctors who haven't kept up with their field.
I guess sometimes you just have to be patient and wait for more evidence, though.
sho
I guess Ill just have to wait and see. I had my dad who is a neuro-otologist read my films as well as one of his friends who is a radiologist and they both said there is no signs of lesions etc. So I dont have lesions at all. I do feel like the neuro I went to see was kind of blowing me off...but I also dont want to "dr hop" if you know what I mean...everyone in my community knows my dad..so I dont want to embarrass him. But I do feel like I saw a dr (who also knows my dad) who is ready to retire...and doenst really care..but I could be wrong..he is an MS specialist...so I dont know..should I take what he said with a grain of salt or believe him..And...if I did have a more progressive form of MS..wouldnt I have at least one lesion on my brain??
FWIW, I think it is possible. A lot of these tests to help diagnose MS seem to lead to less than absolute answers, which is frustrating.
I had a normal MRI (brain, c-spine, and t-spine) in 2001 and neuro #1 said my exam was in the "normal range" even in 2007. He said this about six weeks before I saw neuro #3 who ended up diagnosing me with MS. But even the brain MRI that neuro #3 ordered was read as normal by the radiologist, although the neuro said I have a couple "small spots" (the MS neuro looked at the pics and said the radiologist must have been blind, but the spots didn't look very big to me). I do have several lesions on the c-spine. It's good you're having the c-spine done and maybe should have the t-spine also.
I don't have clear-cut relapses, much less remissions so my symptoms seem like they just go on and on. For years. They have were relatively mild for a long time and only get worse gradually. I don't know how long is too long for a relapse. The health pages mention up to six months or more. The MS Society says "relapses can last for any length of time, but average 4 to 6 weeks." (http://www.mssociety.org.uk/about_ms/types_of_ms/what_is_rrms.html)
My symptoms have been worsening since March and I am dx'd with MS. If you just started having symptoms, you could potentially just have a progressive course.
Anyway, I hope you find a doctor who can come up with some answers.
sho
I had a normal MRI (brain, c-spine, and t-spine) in 2001 and neuro #1 said my exam was in the "normal range" even in 2007. He said this about six weeks before I saw neuro #3 who ended up diagnosing me with MS. But even the brain MRI that neuro #3 ordered was read as normal by the radiologist, although the neuro said I have a couple "small spots" (the MS neuro looked at the pics and said the radiologist must have been blind, but the spots didn't look very big to me). I do have several lesions on the c-spine. It's good you're having the c-spine done and maybe should have the t-spine also.
I don't have clear-cut relapses, much less remissions so my symptoms seem like they just go on and on. For years. They have were relatively mild for a long time and only get worse gradually. I don't know how long is too long for a relapse. The health pages mention up to six months or more. The MS Society says "relapses can last for any length of time, but average 4 to 6 weeks." (http://www.mssociety.org.uk/about_ms/types_of_ms/what_is_rrms.html)
My symptoms have been worsening since March and I am dx'd with MS. If you just started having symptoms, you could potentially just have a progressive course.
Anyway, I hope you find a doctor who can come up with some answers.
sho
I don't know bout all that stuff with the relapsing and all but contrary to the above mentioned things I have read contrasting reports that MRI's can give a false positive as well as a false negative: Please see below I found on internet:
On the other hand, a normal MRI does not absolutely rule out MS. About 5% of people who are confirmed to have MS on the basis of other criteria, do not show any lesions in the brain on MRI. These people may have lesions in the spinal cord or may have lesions that cannot be detected by MRI.
and also this:
A clear-cut diagnosis might be made based on an evaluation of symptoms, signs, and the results of an MRI, but additional tests may be ordered as well. These include tests of evoked potential, cerebrospinal fluid, and blood.
So this is also confusing: Looks as if the others know their stuff and the different searches on the net are just too confusing.
Hope you find out what is going on soon!
EMS Chick
On the other hand, a normal MRI does not absolutely rule out MS. About 5% of people who are confirmed to have MS on the basis of other criteria, do not show any lesions in the brain on MRI. These people may have lesions in the spinal cord or may have lesions that cannot be detected by MRI.
and also this:
A clear-cut diagnosis might be made based on an evaluation of symptoms, signs, and the results of an MRI, but additional tests may be ordered as well. These include tests of evoked potential, cerebrospinal fluid, and blood.
So this is also confusing: Looks as if the others know their stuff and the different searches on the net are just too confusing.
Hope you find out what is going on soon!
EMS Chick
thanks so much for your wisdom!!!! I really appreciate it!! Another question I have is....I have had these symptoms for 2 1/2 months now...they have never gone away...how long do "relapses" last. The neuro also said that my symptoms going on for so long is not typical of MS either....is this true???
I agree with Wonk and Amy.
It's very frustrating to have these symptoms and no answers. What your neurologist told you though, is commonly true in MS. The majority (notice I said majority, not all) will have lesions show on MRI on the very first attack. In my case, I had little to no symptoms of MS, before my first attack, which started with right side torso numbness and tingling. With my very first MRI, I showed a lesion in the thoracic spine and 5 to possibly 7 lesions in the brain, which were highlighted with contrast dye. My Neuro told me that along with my abnormal neurophysical exam, he was sure that I indeed had MS. This was before a spinal tap was ever done.
As Amy said it would also be important to have an MRI to include the thoracic spine. Very important since there is white matter contained there, that MS would "attack." If it is indeed early in your symptomology, you may not have any visible lesions at this time. The body does a good job early on of repairing any places in the brain or spine that were damaged. As time passes, the body is less and less able to repair these places and the lost 'myelin' is replaced with scar tissue. In comes the word "sclerosis," meaning scarring. Many lesions, hence the word, "Multiple."
The strength of the MRI machine is quite important also. Anything less than a power of 3 Tesla (known as 3T) may not find any "hidden" lesions. Most people that have MRI's in small communities, are done on a 1.5T. This machine can catch obvious lesions but may miss many others. A 3T is becoming the standard these days, with stronger MRI's on the horizon.
All MRI's should be done with and without contrast dye. It's also my belief that if no lesions show on MRI, that it is doubtful that anything will show up in the Lumbar Puncture, which is known as "O" bands. Oligliconal banding. (sp?)
I truly hope that you do not have MS, but I know that the need to know, is strong. If this is indeed MS, you can almost be certain that you WILL have another attack. If this happens, this is an ideal time to repeat the MRI's and the physical exam, to look for any abnormalities.
We are glad that you joined us here. I hope that you find the support and caring that you so obviously need. I say, this is the place. You can't go wrong.
All the Best,
Heather
Diagnosed with MS for 13 years
It's very frustrating to have these symptoms and no answers. What your neurologist told you though, is commonly true in MS. The majority (notice I said majority, not all) will have lesions show on MRI on the very first attack. In my case, I had little to no symptoms of MS, before my first attack, which started with right side torso numbness and tingling. With my very first MRI, I showed a lesion in the thoracic spine and 5 to possibly 7 lesions in the brain, which were highlighted with contrast dye. My Neuro told me that along with my abnormal neurophysical exam, he was sure that I indeed had MS. This was before a spinal tap was ever done.
As Amy said it would also be important to have an MRI to include the thoracic spine. Very important since there is white matter contained there, that MS would "attack." If it is indeed early in your symptomology, you may not have any visible lesions at this time. The body does a good job early on of repairing any places in the brain or spine that were damaged. As time passes, the body is less and less able to repair these places and the lost 'myelin' is replaced with scar tissue. In comes the word "sclerosis," meaning scarring. Many lesions, hence the word, "Multiple."
The strength of the MRI machine is quite important also. Anything less than a power of 3 Tesla (known as 3T) may not find any "hidden" lesions. Most people that have MRI's in small communities, are done on a 1.5T. This machine can catch obvious lesions but may miss many others. A 3T is becoming the standard these days, with stronger MRI's on the horizon.
All MRI's should be done with and without contrast dye. It's also my belief that if no lesions show on MRI, that it is doubtful that anything will show up in the Lumbar Puncture, which is known as "O" bands. Oligliconal banding. (sp?)
I truly hope that you do not have MS, but I know that the need to know, is strong. If this is indeed MS, you can almost be certain that you WILL have another attack. If this happens, this is an ideal time to repeat the MRI's and the physical exam, to look for any abnormalities.
We are glad that you joined us here. I hope that you find the support and caring that you so obviously need. I say, this is the place. You can't go wrong.
All the Best,
Heather
Diagnosed with MS for 13 years
In addition to the cspine, see if you can also get the t-spine done. Start a record of what you feel and when, try hard to stay objective about things. Sounds like you have a dr. that will check things out for you. God bless you, Amy
MRI was with and without contrast...had my MRI about a month after symptoms..and the symptoms have been with me now for 2 1/2 months....dr said most with MS will have at least some lesions on the MRI even with first symptoms as alot of lesions are silent...
Hi, just wondering if you could also tell us how long it's been since you first noticed your symptoms? Sorry if this is already in an earlier post, but it would be a good reference to have it here. I ask because from my (medically untrained) understanding, it can take time before lesions can appear. Also, early on the body is more able to repair itself, so lesions can go away, esp. more early on. Also, was your brain MRI with and without contrast?
Good luck with things.
Good luck with things.
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