Aa
Does this sound like MS? Abnormal EMG and SSEP
I have had daily head pain, daily neck pain, daily shoulder pain, daily eye pain and daily shoulder pain for 14 months. It all started with influenza/EBV. I have a daily headache. daily pain mostly on the left side. had to drop out of school/work. I had an abnormal EMG of L arm and abnormal SSEP. I also tested positive for and treated with lyme. This is where it gets tricky because lyme and MS are really similar. Does an abnormal SSEP mean I could have MS????? p.s. exercise/activity makes my pain worse. I used to exercise and can't anymore.
Tests I have had so far: (I am having another MRI of cervical spine with contrast soon)
All positive:
12/07 - influenza
1/08 - EBV/mono - extremely high numbers
9/08 - Lyme and candida
1/09 – EMG of Left arm abnormal – L arm reflexes not working
1/09 – SSEP evoke test abnormal, showed pressure on spine
- Raynauds in fingers and toes
All negative:
1/08 - Ct and MRI of head and face without contrast
2/08 - Spinal tap for pressure
3/08 - Parasite stool sample
4/08 - rheumatoid diseases
4/08 - ENT sinus test
5/08 - 3-D ultrasound of heart
5/08 - Cholesterol
5/08 – Chest X-ray
5/08 - CMV
6/08 - eye tests
9/08 - Hormones
9/08 - Thyroid
12/08 - Toxoplasmosis
12/08 - CBC
12/08 - Sed rate
12/08 – EMG of leg
12/08 – Vitamin deficiencies
12/08 – Wheat allergy
12/08 - MRI of cervical spine without contrast
Signs and Symptoms:
Main symptom: Chronic and Constant daily, severe head and neck pain since January 2008 with eye pain.
L side weakness and pain, visual disturbances, pain with eye movement, frequent urge to urinate, curved fingers. Severe muscle spasms. My entire spine hurts constantly. Hard, swollen lymph node by ear.
This keeps me from living a normal life. The pain and other symptoms are so severe that I am not in school or work. The symptoms are getting progressively worse. I cannot physically function or have any quality of life whatsoever.
Tests I have had so far: (I am having another MRI of cervical spine with contrast soon)
All positive:
12/07 - influenza
1/08 - EBV/mono - extremely high numbers
9/08 - Lyme and candida
1/09 – EMG of Left arm abnormal – L arm reflexes not working
1/09 – SSEP evoke test abnormal, showed pressure on spine
- Raynauds in fingers and toes
All negative:
1/08 - Ct and MRI of head and face without contrast
2/08 - Spinal tap for pressure
3/08 - Parasite stool sample
4/08 - rheumatoid diseases
4/08 - ENT sinus test
5/08 - 3-D ultrasound of heart
5/08 - Cholesterol
5/08 – Chest X-ray
5/08 - CMV
6/08 - eye tests
9/08 - Hormones
9/08 - Thyroid
12/08 - Toxoplasmosis
12/08 - CBC
12/08 - Sed rate
12/08 – EMG of leg
12/08 – Vitamin deficiencies
12/08 – Wheat allergy
12/08 - MRI of cervical spine without contrast
Signs and Symptoms:
Main symptom: Chronic and Constant daily, severe head and neck pain since January 2008 with eye pain.
L side weakness and pain, visual disturbances, pain with eye movement, frequent urge to urinate, curved fingers. Severe muscle spasms. My entire spine hurts constantly. Hard, swollen lymph node by ear.
This keeps me from living a normal life. The pain and other symptoms are so severe that I am not in school or work. The symptoms are getting progressively worse. I cannot physically function or have any quality of life whatsoever.
Hi, and another welcome to the forum. I actually had a whole long, entire answer written out to you and sent it into cyberspace. I'm sorry you are suffering so much and feel so afraid and in the dark about your worsening symptoms. Many of us can relate.
I am frustrated that my long post got lost. I will tell you that it said MANY of the same things that Wonko did. But, to relieve my frustration I am going to reproduce it anyway, even though she said much of the same stuff.
First no one can diagnose anything online. I was not a neurologist, but I will give you my best evaluation of what you have told us. I will have a lot of questions, bacausde I see a bunch of stuff that is missing.
First you need to know that MS is a diagnosis of exclusion. You MUST rule out the various things that mimic MS, before you come to this diagnosis. Lyme is a great mimicker of MS. You already have had positive testing for Lyme and that appears to be from 09/08. This is a huge piece of information. So I can assume that your treatment for Lyme was short - a few months at most. The treatment of Lyme disease is an area of great controversy. In traditional medicine the wisdom is that three weeks of treament is sufficient for almost all cases. the people who specialize in Lyme feel that this should be much longer - a year or more for cases that have neurological involvement. Who treated your Lyme, with what and for how long? I, like Wonko, have an immediate gut feeling that you have inadequately treated NeuroLyme Disease.
********************
Now let's look at your symptoms. Pain, weakness, spasms, urinary problems, visual problems and headache can be seen in both diseases. You sound like your entire course has been continuous - not coming in attacks and remssions. The pattern of symptoms is not typical either for the Primary Progressive form - so your symptom pattern appears to be unusual for MS. this does not rule out MS, but lowers it on the list of suspicion.
However, all of the things you suffer from can and are seen regularly in Lyme Disease.
Optic Neuritis is seen in both diseases. In Lyme it is seen when the spirochete invades the central nervous system.
Swollen lymph nodes are seen mostly in infections and some cancers. They are not part of MS. They could be leftovers from the EBV infection a year ago or from Lyme or another infection. A prior bout of mononucleosis (not just an infection with EBV) is very often seen with MS. Did you have actual "mono?"
Raynauds is most often associated with an autoimmune, inflammatory disease considered in the Rheumatological diseases. It is not especially associated with MS, but many of us with MS here on the forum have it. It can also be seen by itself in healthy people. I do not know if it has any association with Lyme disease.
******************************
If we look at the various testing you have had done we get a stronger sense of what the basic problem might be.
The positive EMG refers to damage within a muscle that can be from direct muscle damage or from damage to the moter nerve supplying it. The EMG is usually done along with a Nerve Conduction Study. Did you have this too? When either of these tests is positive, you are looking at damage within the nerves that are out in the body; that have left the spinal canal. This is called the Peripheral Nervous System. The Lyme spirochete has a special tendency to attack the peripheral nerves. So that test being positive points toward something other than MS. Lyme is a good candidate, but there are others.
The positive SSEP is indeed seen in MS and other diseases of demyelination in the Central Nervous System - the CNS. The CNS is made up of the brain, the brainstem and the spinal cord. It indicates an area along a sensaory nerve (a nerve that carries information about sensation from the body to the brain). This is evidence that would weigh in with both MS and Lyme (or others diseases). When Lyme disease invades the CNS you can get a positive SSEP.
When you say L arm reflexes are not working I assume you mean there is no reflex when it is tapped. This is more typical of a peripheral nerve disease like Lyme or others (like Chronic Inflammatory Demeylinating Polyneuropathy). It can happen in MS, but is much less usual. As I said before Lyme really, really likes the peripheral nervous system.
Having an infection immediately prior to the onset of symptoms is something we very often see in MS. The immune stimulation of an infection can precipitate both the onset of MS and an acute relapse. Note that the infection itself doesn't directly casue MS. Some infections can supress the immune system's ability to fend off other infections. Influenza is one of those infections, so the flu could be imagined to allow a quiet Lyme infection to act up. I don't think this one helps us.
You had a spinal tap that showed normal pressure. Is that all they tested for???? With so many neurological symptoms I would expect the fluid to be sent for the whole gamut of things, cell count, protein, glucose, cultures, MS Panel, Lyme markers, etc. Do you know if other things were tested? I think you should get the complete results in hard copy.
You had eye testing. Did they consider optic neuritis? Did they do a VEP - Visual Evoked Response or Visual Field testing or color testing? Optic neuritis can and does occur in MS and in Lyme disease when the CNS has been invaded.
The negative MRIs drop MS downward in supicion, but only if they were done on a high power MRI machine (especially the spine). Low power machines can not pick up many smaller MS lesions. So, depending, that test points generally away from MS.
Have they ruled out a disc problem in your neck? that could cause much of what you are experiencing.
So, looking at the symptoms, findings and test results points far more strongly at an inadequately treated Lyme disease with Invasion of the CNS than it does to MS. This isn't to say that someone with MS can get infected with Lyme. You have only soft indicators pointing toward MS, though.
Have you been seen by an Infectious Disease specialist? I think this would be important. It would be great if this doctor also regularly treated Lyme patients. These docs can be hard to find. We have a Lyme Forum and Wonko invited you. I think a visit there would be most enlightening. It is true that some people in the Lyme world have some unusual notions, but there are good, smart people over there who can help.
***********
Now the final thing is the severe pain you are having. While you are making your way through the diagnostic stuff and such, someone should be aggressively attacking the problem of this severe pain. Nerve pain does not respond to the regular pain relievers, nor very well to narcotics. I invite you to read two essays written by a pain management doc for us. You can click on the two links below
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Nerve-Neuropathic-Pain---A-Primer/show/371?cid=36
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/General-Principles-of-Treating-Neuropathic-Nerve-Pain/show/452?cid=36
I hope we can all help sort this out with you. Please check out the Lyme Forum and stay here, too, if you want.
I'm looking forward to the answers to my questions.
Quix
I am frustrated that my long post got lost. I will tell you that it said MANY of the same things that Wonko did. But, to relieve my frustration I am going to reproduce it anyway, even though she said much of the same stuff.
First no one can diagnose anything online. I was not a neurologist, but I will give you my best evaluation of what you have told us. I will have a lot of questions, bacausde I see a bunch of stuff that is missing.
First you need to know that MS is a diagnosis of exclusion. You MUST rule out the various things that mimic MS, before you come to this diagnosis. Lyme is a great mimicker of MS. You already have had positive testing for Lyme and that appears to be from 09/08. This is a huge piece of information. So I can assume that your treatment for Lyme was short - a few months at most. The treatment of Lyme disease is an area of great controversy. In traditional medicine the wisdom is that three weeks of treament is sufficient for almost all cases. the people who specialize in Lyme feel that this should be much longer - a year or more for cases that have neurological involvement. Who treated your Lyme, with what and for how long? I, like Wonko, have an immediate gut feeling that you have inadequately treated NeuroLyme Disease.
********************
Now let's look at your symptoms. Pain, weakness, spasms, urinary problems, visual problems and headache can be seen in both diseases. You sound like your entire course has been continuous - not coming in attacks and remssions. The pattern of symptoms is not typical either for the Primary Progressive form - so your symptom pattern appears to be unusual for MS. this does not rule out MS, but lowers it on the list of suspicion.
However, all of the things you suffer from can and are seen regularly in Lyme Disease.
Optic Neuritis is seen in both diseases. In Lyme it is seen when the spirochete invades the central nervous system.
Swollen lymph nodes are seen mostly in infections and some cancers. They are not part of MS. They could be leftovers from the EBV infection a year ago or from Lyme or another infection. A prior bout of mononucleosis (not just an infection with EBV) is very often seen with MS. Did you have actual "mono?"
Raynauds is most often associated with an autoimmune, inflammatory disease considered in the Rheumatological diseases. It is not especially associated with MS, but many of us with MS here on the forum have it. It can also be seen by itself in healthy people. I do not know if it has any association with Lyme disease.
******************************
If we look at the various testing you have had done we get a stronger sense of what the basic problem might be.
The positive EMG refers to damage within a muscle that can be from direct muscle damage or from damage to the moter nerve supplying it. The EMG is usually done along with a Nerve Conduction Study. Did you have this too? When either of these tests is positive, you are looking at damage within the nerves that are out in the body; that have left the spinal canal. This is called the Peripheral Nervous System. The Lyme spirochete has a special tendency to attack the peripheral nerves. So that test being positive points toward something other than MS. Lyme is a good candidate, but there are others.
The positive SSEP is indeed seen in MS and other diseases of demyelination in the Central Nervous System - the CNS. The CNS is made up of the brain, the brainstem and the spinal cord. It indicates an area along a sensaory nerve (a nerve that carries information about sensation from the body to the brain). This is evidence that would weigh in with both MS and Lyme (or others diseases). When Lyme disease invades the CNS you can get a positive SSEP.
When you say L arm reflexes are not working I assume you mean there is no reflex when it is tapped. This is more typical of a peripheral nerve disease like Lyme or others (like Chronic Inflammatory Demeylinating Polyneuropathy). It can happen in MS, but is much less usual. As I said before Lyme really, really likes the peripheral nervous system.
Having an infection immediately prior to the onset of symptoms is something we very often see in MS. The immune stimulation of an infection can precipitate both the onset of MS and an acute relapse. Note that the infection itself doesn't directly casue MS. Some infections can supress the immune system's ability to fend off other infections. Influenza is one of those infections, so the flu could be imagined to allow a quiet Lyme infection to act up. I don't think this one helps us.
You had a spinal tap that showed normal pressure. Is that all they tested for???? With so many neurological symptoms I would expect the fluid to be sent for the whole gamut of things, cell count, protein, glucose, cultures, MS Panel, Lyme markers, etc. Do you know if other things were tested? I think you should get the complete results in hard copy.
You had eye testing. Did they consider optic neuritis? Did they do a VEP - Visual Evoked Response or Visual Field testing or color testing? Optic neuritis can and does occur in MS and in Lyme disease when the CNS has been invaded.
The negative MRIs drop MS downward in supicion, but only if they were done on a high power MRI machine (especially the spine). Low power machines can not pick up many smaller MS lesions. So, depending, that test points generally away from MS.
Have they ruled out a disc problem in your neck? that could cause much of what you are experiencing.
So, looking at the symptoms, findings and test results points far more strongly at an inadequately treated Lyme disease with Invasion of the CNS than it does to MS. This isn't to say that someone with MS can get infected with Lyme. You have only soft indicators pointing toward MS, though.
Have you been seen by an Infectious Disease specialist? I think this would be important. It would be great if this doctor also regularly treated Lyme patients. These docs can be hard to find. We have a Lyme Forum and Wonko invited you. I think a visit there would be most enlightening. It is true that some people in the Lyme world have some unusual notions, but there are good, smart people over there who can help.
***********
Now the final thing is the severe pain you are having. While you are making your way through the diagnostic stuff and such, someone should be aggressively attacking the problem of this severe pain. Nerve pain does not respond to the regular pain relievers, nor very well to narcotics. I invite you to read two essays written by a pain management doc for us. You can click on the two links below
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Nerve-Neuropathic-Pain---A-Primer/show/371?cid=36
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/General-Principles-of-Treating-Neuropathic-Nerve-Pain/show/452?cid=36
I hope we can all help sort this out with you. Please check out the Lyme Forum and stay here, too, if you want.
I'm looking forward to the answers to my questions.
Quix
Hi there,
First, I think your approach so far, to get a very thorough and complete work up, is appropriate. However, the results you list as coming back abnormal make me wonder if your treatment for Lyme could have been incomplete.
For how long were you treated? Also, were you tested for Lyme co-infections? Many co-infections respond to different antibiotics than Lyme, and this is a big reason why many Lyme patients remain ill after treatment with a single antibiotic.
From the anecdotal evidence I've read, many Lyme patients can have abnormal EMG results and also test positive for EBV. I agree with LuLu. While an abnormal SSEP may indicate possible MS, if it is unsupported by brain MRI (I see you are pending a c-spine MRI), then MS seems unlikely if your symptoms are that advanced. An abnormal EMG is not consistent with MS.
I am a Lyme patient, and have experienced many of what you list, including the visual disturbances and eye pain with movement (I highlight that one since I never knew that was a common experience among Lyme patients until after my diagnosis).
I've spent a lot of time reading literature on Lyme and about the confusion/controversies surrounding it, and I've also spent a good amount of time reading in Lyme patient-to-patient forums. It continues to shock me how many Lyme patients go through a zoo of doctors, hospitals, and tests before finally getting proper treatment for Lyme.
For you, or for anyone who has gone through a rigorous and thorough differential diagnosis through mainstream medicine, yet still have no diagnosis despite disabling symptoms which interfere with normal life, I'd suggest looking further into Lyme. Sadly, in many cases, Lyme is written off early on despite the fact that the blood tests are faulty.
Two of my favorite resources are "Under Our Skin," a documentary (yet to be released in theaters), and the book "Cure Unknown" by Pam Weintraub. Both have easy to find websites, each with a plethora of content to get anyone interested off to a good start on researching this matter.
There is also a Lyme forum here on MedHelp. It is much more "quiet" than this forum, but the regulars are all caring and helpful. It can be found here:
http://www.medhelp.org/forums/show/148
The only other idea I would have, and you may have pursued it already given some of the test you list, would be to find the a good infectious disease doctor.
Take care.
First, I think your approach so far, to get a very thorough and complete work up, is appropriate. However, the results you list as coming back abnormal make me wonder if your treatment for Lyme could have been incomplete.
For how long were you treated? Also, were you tested for Lyme co-infections? Many co-infections respond to different antibiotics than Lyme, and this is a big reason why many Lyme patients remain ill after treatment with a single antibiotic.
From the anecdotal evidence I've read, many Lyme patients can have abnormal EMG results and also test positive for EBV. I agree with LuLu. While an abnormal SSEP may indicate possible MS, if it is unsupported by brain MRI (I see you are pending a c-spine MRI), then MS seems unlikely if your symptoms are that advanced. An abnormal EMG is not consistent with MS.
I am a Lyme patient, and have experienced many of what you list, including the visual disturbances and eye pain with movement (I highlight that one since I never knew that was a common experience among Lyme patients until after my diagnosis).
I've spent a lot of time reading literature on Lyme and about the confusion/controversies surrounding it, and I've also spent a good amount of time reading in Lyme patient-to-patient forums. It continues to shock me how many Lyme patients go through a zoo of doctors, hospitals, and tests before finally getting proper treatment for Lyme.
For you, or for anyone who has gone through a rigorous and thorough differential diagnosis through mainstream medicine, yet still have no diagnosis despite disabling symptoms which interfere with normal life, I'd suggest looking further into Lyme. Sadly, in many cases, Lyme is written off early on despite the fact that the blood tests are faulty.
Two of my favorite resources are "Under Our Skin," a documentary (yet to be released in theaters), and the book "Cure Unknown" by Pam Weintraub. Both have easy to find websites, each with a plethora of content to get anyone interested off to a good start on researching this matter.
There is also a Lyme forum here on MedHelp. It is much more "quiet" than this forum, but the regulars are all caring and helpful. It can be found here:
http://www.medhelp.org/forums/show/148
The only other idea I would have, and you may have pursued it already given some of the test you list, would be to find the a good infectious disease doctor.
Take care.
I am so sorry you have such a list of problems with no answers. I honestly don't know enough about Lyme to comment, and have asked a friend who is a lyme's patient to stop through here and help us out. I don't know when she will be by, so please be patient.
I'm no doctor, but my first reaction to all of your symptoms is to put MS on the back burner, because I don't think that's what is going on with you. But I could be wrong.
my best,
Lulu
I'm no doctor, but my first reaction to all of your symptoms is to put MS on the back burner, because I don't think that's what is going on with you. But I could be wrong.
my best,
Lulu
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