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Could it be MS?
Hello, all. I'd appreciate it if some could let me know if some of the symptoms my 15-year-old daughter has been experiencing the last several years could indicate MS. Several months ago her pediatrician referred her to a neurologist who is treating on the basis of a diagnosis of migraines, which might be right (I am no medical professional), but some of her symptoms seem rather extreme for migraines.
1. She has had two episodes, a year apart, in which she could not walk. She was hospitalized the first time for five days with no diagnosis. Although she had a slightly stiff neck, it was not bacterial meningitis. At first she couldn't walk at all, then for days she couldn't stand up without ataxia. The second episode she did not have the headache or stiff neck. Her legs simply gave out on her when she would try to walk across the room. She said her legs did not hurt, just felt very weak. I took her to the ER (spent eight hours there, with no tests run but blood work and a brief basic neuro exam by someone who seemed new at it). By the end of the day she could walk with ataxia and unsteadiness. In between these attacks and since then the last, she has episodes of ataxia, stumbling a bit, falling when trying to walk down stairs. Does this sound like MS? Or would an acute episode of MS always result in the complete inability to walk for days at a time?
2. She had an MRI during the first "attack." I read the report, and it said it was an MRI of the posterior fossa and unremarkable. So does this rule out MS? Can a first MS attack not show any demyelinated brain lesions? Does MS cause lesions, say, on the spinal cord only and not in the brain? Should I insist on a full body scan?
3. She has visual disturbances. At first she said it was like a tv picture going bad, a sort of greyness. But for the past six months, she has seen images, people she knows are not really there. She is not hallucinating, does not think they are real, instead a part of migraine visual disturbances. Can migraines cause you to see people who don't exist, very briefly? Can MS? Yes, the neurologist looked into her eyes with the hand held lighted tool (whatever you call it). I assume he found no optic neuritis. Can optic neuritis cause those images in the first place? Would evidence of optic nerve inflammation come and go and not be detected in between MS "attacks?"
4. Sleep-deprived EEG was normal.
5. She has a very low tolerance for heat and sunlight; they fatigue her greatly. Imagine this, a gorgeous 15-year-old girl passed on a trip to the Outer Banks and beach this summer, knowing the sun and heat would increase her ataxia and incapacitate her with fatigue. Is this an MS symptom? Is it a migraine symptom?
6. The neurologist's prescription of Inderal has decreased her headaches, but not her fatigue, ataxia, and visual disturbances. What should I make of that?
Any answers would be greatly appreciated. What are your experiences?
Thanks, a Worried Mom
1. She has had two episodes, a year apart, in which she could not walk. She was hospitalized the first time for five days with no diagnosis. Although she had a slightly stiff neck, it was not bacterial meningitis. At first she couldn't walk at all, then for days she couldn't stand up without ataxia. The second episode she did not have the headache or stiff neck. Her legs simply gave out on her when she would try to walk across the room. She said her legs did not hurt, just felt very weak. I took her to the ER (spent eight hours there, with no tests run but blood work and a brief basic neuro exam by someone who seemed new at it). By the end of the day she could walk with ataxia and unsteadiness. In between these attacks and since then the last, she has episodes of ataxia, stumbling a bit, falling when trying to walk down stairs. Does this sound like MS? Or would an acute episode of MS always result in the complete inability to walk for days at a time?
2. She had an MRI during the first "attack." I read the report, and it said it was an MRI of the posterior fossa and unremarkable. So does this rule out MS? Can a first MS attack not show any demyelinated brain lesions? Does MS cause lesions, say, on the spinal cord only and not in the brain? Should I insist on a full body scan?
3. She has visual disturbances. At first she said it was like a tv picture going bad, a sort of greyness. But for the past six months, she has seen images, people she knows are not really there. She is not hallucinating, does not think they are real, instead a part of migraine visual disturbances. Can migraines cause you to see people who don't exist, very briefly? Can MS? Yes, the neurologist looked into her eyes with the hand held lighted tool (whatever you call it). I assume he found no optic neuritis. Can optic neuritis cause those images in the first place? Would evidence of optic nerve inflammation come and go and not be detected in between MS "attacks?"
4. Sleep-deprived EEG was normal.
5. She has a very low tolerance for heat and sunlight; they fatigue her greatly. Imagine this, a gorgeous 15-year-old girl passed on a trip to the Outer Banks and beach this summer, knowing the sun and heat would increase her ataxia and incapacitate her with fatigue. Is this an MS symptom? Is it a migraine symptom?
6. The neurologist's prescription of Inderal has decreased her headaches, but not her fatigue, ataxia, and visual disturbances. What should I make of that?
Any answers would be greatly appreciated. What are your experiences?
Thanks, a Worried Mom
Thanks once again for the replies. I read the Health Pages for MS and saw that it is important to also have an MRI for the cervical and thoracic spines. I also read that an LP can be a diagnostic tool (my daughter won't like that, so it is a good idea, Rena, to have them test for multiple conditions so she won't have to experience multiple LPs). I'm tempted to print some of those pages out and take them to the neurologist for back up. Then again, I can see how that action might alienate a medical professional. Maybe I could just fashion some index cards for myself and bring up the most salient points. Also, my daughter needs a check up anyway for vision (she wears glasses), and I could take her to that and see what happens and mention the weird things she sees. Maybe the optometrist would see something that would indicate a referral to an ophthalmologist
Many people seem to theorize that MS is an autoimmune disease. Does a blood test for ANA ever give any clues, the same test that helps diagnose lupus?
You know, the times I've taken my daughter to the neurologist and counselors ( I don't think they were licensed psychologists), none of them have done a mental status exam as I know it from being a social security disability examiner and reading lots of them. No testing of immediate, recent, and remote memory, etc.
Jon, my daughter's headaches center in the bottom back of her head. She seemed to have weakness in both legs when she couldn't walk, but I might be wrong. She sees the people rushing by out of the corner of her eye, but hasn't noted if it is one eye or both eyes. She has never complained of tingling or buzzing.
Sorry you have MS, Jon. But maybe my daughter doesn't if she does not fit the symptoms as you listed, which would be a relief. Maybe she had a form of aseptic meningitis 02/2007 that's still causing symptoms now, such as the migraines? Unfortunately, she does have the great heat intolerance. I remember this summer she went on a fairly undemanding walk around a lake with us, although it was hot and sunny, looking forward to going to her favorite restaurant afterward. She couldn't eat once her food was set in front of her, felt too weak and sick.
Can you send me a link that discusses how migraines alone can cause ataxia?
Once again, thanks so much for the information you all have taken the time to share. Kim
Many people seem to theorize that MS is an autoimmune disease. Does a blood test for ANA ever give any clues, the same test that helps diagnose lupus?
You know, the times I've taken my daughter to the neurologist and counselors ( I don't think they were licensed psychologists), none of them have done a mental status exam as I know it from being a social security disability examiner and reading lots of them. No testing of immediate, recent, and remote memory, etc.
Jon, my daughter's headaches center in the bottom back of her head. She seemed to have weakness in both legs when she couldn't walk, but I might be wrong. She sees the people rushing by out of the corner of her eye, but hasn't noted if it is one eye or both eyes. She has never complained of tingling or buzzing.
Sorry you have MS, Jon. But maybe my daughter doesn't if she does not fit the symptoms as you listed, which would be a relief. Maybe she had a form of aseptic meningitis 02/2007 that's still causing symptoms now, such as the migraines? Unfortunately, she does have the great heat intolerance. I remember this summer she went on a fairly undemanding walk around a lake with us, although it was hot and sunny, looking forward to going to her favorite restaurant afterward. She couldn't eat once her food was set in front of her, felt too weak and sick.
Can you send me a link that discusses how migraines alone can cause ataxia?
Once again, thanks so much for the information you all have taken the time to share. Kim
Hmmm,,,, you state that she has a DX of migraines. Does she have "typical" migraine headaches? Can you describe the headaches.
I have MS and Yes some of her symptoms do occur with MS but also with probably a 100 other conditions.
MS typically is experienced with one eye, one leg, etc. It would be highly unusual for an MS sufferer to experience first time equal weakness in both legs. Or an equal visual disturbance in both eyes.
Migraines in a certain area of brain can cause the ataxia which may be confused with weakness.
There is no harm in getting a MRI of the spine (cervical, thoriac, lumbar) w and w/o contrast. Yes it is possible to have MS without detected lesions.
Another question, has she experienced any sensory symptoms in the legs such as numbness, buzzing, sensory change, etc.?
Jon
I have MS and Yes some of her symptoms do occur with MS but also with probably a 100 other conditions.
MS typically is experienced with one eye, one leg, etc. It would be highly unusual for an MS sufferer to experience first time equal weakness in both legs. Or an equal visual disturbance in both eyes.
Migraines in a certain area of brain can cause the ataxia which may be confused with weakness.
There is no harm in getting a MRI of the spine (cervical, thoriac, lumbar) w and w/o contrast. Yes it is possible to have MS without detected lesions.
Another question, has she experienced any sensory symptoms in the legs such as numbness, buzzing, sensory change, etc.?
Jon
Hey Kim...glad you got back to me! Lesions can show up in the C-Spine MRI and not in an MRI of the brain. Did you get a chance to read any of the Health Pages? There is an article called "My family doctor thinks I may have MS...what do I do now?" and it explains what the next logical step would be. I would say that she should have a C-Spine MRI to rule out lesions there and then perhaps a Lumbar Puncture to rule out both MS and possibly any of the MS Mimics. If the neurologist is open to having an LP done, ensure that tests for other diseases are ordered and not just MS...they tend to only test for MS and then discard the rest of the fluid without testing it and it can be very valuable in discerning if other diseases may be present and you only want her to have to have one LP if possible.
If I were you, I would take down all of the things that were missed in the neurological examination and aske the neurologist about why he didn't do them and if he will do them now. These tests can tell him about her mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses and are an important part of a neuro deciding if further testing for MS is required.
These things that she sees...are they just a fleeting sight, like out of the corner of her eye (peripheral vision)? They could be a paresthesia which has been described by many here as perhaps a mouse running across the room that you know is not there and no one else see's it but we are sure it was there. Have you thought to have your daughters eye's tested by an Opthamologist...if not this is something that I think you should have done as well.
Evoked Potential testing is another option but generally is not done until after an LP. This testing measures the time it takes for a nerve to respond to stimulation and is a very valuable test as well.
Kim...I really think that if you feel you can talk to the current neurologist you should try to have him perform a few more tests. If he doesn't feel any need and you still feel uncomfortable that nothing has been diagnosed, I would consider either trying to find an MS Specialist in your state or travelling to another state to have her seen.
You have to realize that regardless of whether or not there are lesions showing on the MRI of her brain at this time, there has been no direct correlation between lesions and symptoms. This means that if she were showing lesions, she may or may not have symptoms...it is a very complicated disease. In my case I have been diagnosed with MS since 1993, have been in remission until July 2007 when I had a relapse, have had symptoms of MS ever since and because my Neurologist didn't see any change on my last MRI she has deemed my disease "in-active or benign" and has denied me the disease modifying drugs. Of late, there have been several articles in the news stating that there is no such thing as "in-active or benign MS" and that the disease is constantly causing damage and that is why it is so important that someone is started on the Disease Modifying Drugs as soon as possible after diagnosis in order that they may slow the disease progression.
I hope this has been of some help to you and please take the time to read over the Health Pages...you will find even more information there. I look forward to hearing from you again and please stay in touch and let us know what you decide to do ok?
Lots of Hugs,
Rena
If I were you, I would take down all of the things that were missed in the neurological examination and aske the neurologist about why he didn't do them and if he will do them now. These tests can tell him about her mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses and are an important part of a neuro deciding if further testing for MS is required.
These things that she sees...are they just a fleeting sight, like out of the corner of her eye (peripheral vision)? They could be a paresthesia which has been described by many here as perhaps a mouse running across the room that you know is not there and no one else see's it but we are sure it was there. Have you thought to have your daughters eye's tested by an Opthamologist...if not this is something that I think you should have done as well.
Evoked Potential testing is another option but generally is not done until after an LP. This testing measures the time it takes for a nerve to respond to stimulation and is a very valuable test as well.
Kim...I really think that if you feel you can talk to the current neurologist you should try to have him perform a few more tests. If he doesn't feel any need and you still feel uncomfortable that nothing has been diagnosed, I would consider either trying to find an MS Specialist in your state or travelling to another state to have her seen.
You have to realize that regardless of whether or not there are lesions showing on the MRI of her brain at this time, there has been no direct correlation between lesions and symptoms. This means that if she were showing lesions, she may or may not have symptoms...it is a very complicated disease. In my case I have been diagnosed with MS since 1993, have been in remission until July 2007 when I had a relapse, have had symptoms of MS ever since and because my Neurologist didn't see any change on my last MRI she has deemed my disease "in-active or benign" and has denied me the disease modifying drugs. Of late, there have been several articles in the news stating that there is no such thing as "in-active or benign MS" and that the disease is constantly causing damage and that is why it is so important that someone is started on the Disease Modifying Drugs as soon as possible after diagnosis in order that they may slow the disease progression.
I hope this has been of some help to you and please take the time to read over the Health Pages...you will find even more information there. I look forward to hearing from you again and please stay in touch and let us know what you decide to do ok?
Lots of Hugs,
Rena
Thanks for your reply, Rena. My daughter's neurologist is one of only two pediatric neurologists in our area, and he seems to be in a hurry when we see him. I've been with my daughter during every neuro exam described in your link. He did not check for atrophy, one muscle larger than the corresponding muscle on the other side. He did not check for sensory deprivation with pinpricks, etc. He did check reflexes, but never told me the rating of the DTRs. He checked her eyes, but shrugged off the accounts of visual disturbances, so it her eyes must have looked normal. So I don't know what to think.
So would MS show up in an MRI of the cervical spine or lower and not the brain? Should I push for this, even pay for it out of pocket? Will it show up in an MRI if she suffers her acute phases of not being able to walk only once a year?
And what about those people she sees that she knows aren't really there? I've taken her to several different counselors who say she may be mildly depressed, but certainly not schizophrenic She knows the things she very occasionally sees aren't real, just deals with it. She is one of the most level-headed people I know.
I don't know if we have any MS specialists here in WV, but I will find out. Probably not, and we are very far from wealthy, just average working people lucky enough to have health insurance from our employers now, an HMO that hates to pay for anything extra. So what can I reasonably expect to push our neurologist for?
So glad I found this site. Kim
So would MS show up in an MRI of the cervical spine or lower and not the brain? Should I push for this, even pay for it out of pocket? Will it show up in an MRI if she suffers her acute phases of not being able to walk only once a year?
And what about those people she sees that she knows aren't really there? I've taken her to several different counselors who say she may be mildly depressed, but certainly not schizophrenic She knows the things she very occasionally sees aren't real, just deals with it. She is one of the most level-headed people I know.
I don't know if we have any MS specialists here in WV, but I will find out. Probably not, and we are very far from wealthy, just average working people lucky enough to have health insurance from our employers now, an HMO that hates to pay for anything extra. So what can I reasonably expect to push our neurologist for?
So glad I found this site. Kim
Hello and welcome to the MS Forum! I am so sorry to hear of all the symptoms that your daughter is having to deal with but I think you have come to the right place. There is a great group of people here that either have been diagnosed with MS and are being treated, those that are in limboland between having symptoms and knowing the cause and being diagnosed and not being treated (me).
First of all I would like to remind you that we are not physicians and therefore cannot make a diagnosis, however, we feel that with our combined experiences and the knowledge we have gleaned during our stay here we can be of some help to you.
I would like for you to look at the top right hand corner of this page where you will see Health Pages and click on it...you will find a plethora of information here that is invaluable to anyone looking at the possible diagnosis of MS. You are your own best advocate and it is important to remember that ok?
To be honest, in my opinion some of the symptoms that your daughter has displayed could be related to MS but you have to remember that there are MS mimics that are a possibility as well and the only way to find out which is which is to ensure that the proper testing is done.
Your daughter should have a full neurological examination and this would best be done by an MS Specialist but if you are comfortable with her current neurologist, please look at the following website and ensure that these steps are followed when she has an exam:
http ://www .opt .pacificu .edu /ce /catalog /COPE9462 /Neuro_Zelczak .html
I had to put in some spaces in this address because otherwise our medhelp will automatically delete these addresses so just delete the space in front of each "/".
Your daughter should have an MRI of her CT Spine and Brain with and without contrast if possible. Even if there are no lesions found right away...she could still have symptoms and the lesions may just be out of view and further testing as well as some waiting may be required before a lesion will be seen on MRI. Not seeing a lesion does not mean that they are not there and the disease can still be quite active.
Heat is the enemy to anyone with MS. We have to avoid hot baths,hot showers, hottubs and are extremely careful to avoid getting overheated in the summer. Most of us have air conditioning and wear cooling vests and such. If we allow ourselves to become overheated we are taking the chance of having a serious relapse that could cause irreparable damage in the form of anything from vision difficulties, to mobility issues to an inability to communicate due to cognitive problems. So your daughter was right to avoid the beach!
I certainly hope that I have been of some help here my dear and I am sure that others will pop in and offer more if they have it. It is a little slow on the weekends but once it gets cold it will get busier I am sure. If you have any further questions please feel free to post them at your leisure and if you want to talk privately you can private message any of us at any time. I am looking forward to getting to know you and I hope you give us the opportunity to help find some answers for your daughter!
Lots of Hugs,
Rena705
First of all I would like to remind you that we are not physicians and therefore cannot make a diagnosis, however, we feel that with our combined experiences and the knowledge we have gleaned during our stay here we can be of some help to you.
I would like for you to look at the top right hand corner of this page where you will see Health Pages and click on it...you will find a plethora of information here that is invaluable to anyone looking at the possible diagnosis of MS. You are your own best advocate and it is important to remember that ok?
To be honest, in my opinion some of the symptoms that your daughter has displayed could be related to MS but you have to remember that there are MS mimics that are a possibility as well and the only way to find out which is which is to ensure that the proper testing is done.
Your daughter should have a full neurological examination and this would best be done by an MS Specialist but if you are comfortable with her current neurologist, please look at the following website and ensure that these steps are followed when she has an exam:
http ://www .opt .pacificu .edu /ce /catalog /COPE9462 /Neuro_Zelczak .html
I had to put in some spaces in this address because otherwise our medhelp will automatically delete these addresses so just delete the space in front of each "/".
Your daughter should have an MRI of her CT Spine and Brain with and without contrast if possible. Even if there are no lesions found right away...she could still have symptoms and the lesions may just be out of view and further testing as well as some waiting may be required before a lesion will be seen on MRI. Not seeing a lesion does not mean that they are not there and the disease can still be quite active.
Heat is the enemy to anyone with MS. We have to avoid hot baths,hot showers, hottubs and are extremely careful to avoid getting overheated in the summer. Most of us have air conditioning and wear cooling vests and such. If we allow ourselves to become overheated we are taking the chance of having a serious relapse that could cause irreparable damage in the form of anything from vision difficulties, to mobility issues to an inability to communicate due to cognitive problems. So your daughter was right to avoid the beach!
I certainly hope that I have been of some help here my dear and I am sure that others will pop in and offer more if they have it. It is a little slow on the weekends but once it gets cold it will get busier I am sure. If you have any further questions please feel free to post them at your leisure and if you want to talk privately you can private message any of us at any time. I am looking forward to getting to know you and I hope you give us the opportunity to help find some answers for your daughter!
Lots of Hugs,
Rena705
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