Aa
diagnosing ms
I have been found to have a few red flags for possible ms. I have hyperreflexia, nerve delay seen on an ssep and one lesion on the right brain. I do not have any symptoms and this was found because I had a car accident and whiplash.
The neurologist recommends a spinal tap. I would rather go for a vep. Does anyone know how accurate the vep is? The interet has conflicting reports.I think the spinal tap isn't pefectly accurate either. Thanks, Judy
The neurologist recommends a spinal tap. I would rather go for a vep. Does anyone know how accurate the vep is? The interet has conflicting reports.I think the spinal tap isn't pefectly accurate either. Thanks, Judy
What stories! How devastating it must have been to hear news like that when you weren't even suspecting MS yourself.
Unfortunately, we have seen so many new people with all kinds of tales about how they are getting a diagnosis. I'm glad you two have shared with us.
Please let us know how things are going!
Judy~ Good luck with the testing!
Feel well, girls!
Zilla*
Unfortunately, we have seen so many new people with all kinds of tales about how they are getting a diagnosis. I'm glad you two have shared with us.
Please let us know how things are going!
Judy~ Good luck with the testing!
Feel well, girls!
Zilla*
Thank you so much for your help and support. I am just going to get the lumbar puncture. The office did finally get back to me. I am not nervous about the procedure, just the results. I will keep in touch.
Thanks again, Judy
Thanks again, Judy
I think and can't be for sure, that the other person Quix is referring to above is me. (Quix: correct me if I am wrong here)
Last August I fell while running and went to the ER b/c I had a concussion. They did a CT scan and noted that I should have a follow up MRI to "investigate an abnormality unrelated to the accident". I didn't think much of it till my PCP ordered the MRI a month later. She called the next day and told me that I have numerous lesions in my white matter and that she was referring me to a Neurologist. Long story short, I have very few symptoms if any, and we went ahead and did an LP, VEP and lots of bloodwork. All were normal. I went back for a second MRI at the 6 month mark, since the MS sepcialist I was sent to, thought that it was just a one time event and it wasn't MS. Unlucky for me, that 2nd MRI showed new lesions and some old ones had gotten larger.
I definetly can understand where you are right now. My Nuero had just casually thrown around MS until the 2nd MRI showed new lesions and now I have a "probable MS" diagnosis and go back for my next MRI and appointment in 3 weeks.
It was certainly scary going from feeling pretty healthy to we think you have MS in a matter of 6 months. It has been a frustrating and frightening journey. I can tell you that I didn't know a whole lot until a few weeks ago when I started reading and posting things on this forum. Everyone had been very kind and has helped answer all of my questions.
My doctor didn't give me a choice on the LP and the VEP, but instead told me that he wanted all of the information he could have availible to him. The VEP is an easy test, you just have to stare at a computer screen while the fhow checkerboard patterns. I was pretty nervous about the LP, but the procedure itself was not too bad. The only pain was when they numbed the area. I didn't fell anything after that. Unfortunately, I was one of the few that got a horrible headache after the procedure, but they went and performed a "blood patch"and I was good to go after that.
Anyway, I just wanted to reply and let you know that there are others who are in similar shoes and that you can ask me anything.
-Amy
Last August I fell while running and went to the ER b/c I had a concussion. They did a CT scan and noted that I should have a follow up MRI to "investigate an abnormality unrelated to the accident". I didn't think much of it till my PCP ordered the MRI a month later. She called the next day and told me that I have numerous lesions in my white matter and that she was referring me to a Neurologist. Long story short, I have very few symptoms if any, and we went ahead and did an LP, VEP and lots of bloodwork. All were normal. I went back for a second MRI at the 6 month mark, since the MS sepcialist I was sent to, thought that it was just a one time event and it wasn't MS. Unlucky for me, that 2nd MRI showed new lesions and some old ones had gotten larger.
I definetly can understand where you are right now. My Nuero had just casually thrown around MS until the 2nd MRI showed new lesions and now I have a "probable MS" diagnosis and go back for my next MRI and appointment in 3 weeks.
It was certainly scary going from feeling pretty healthy to we think you have MS in a matter of 6 months. It has been a frustrating and frightening journey. I can tell you that I didn't know a whole lot until a few weeks ago when I started reading and posting things on this forum. Everyone had been very kind and has helped answer all of my questions.
My doctor didn't give me a choice on the LP and the VEP, but instead told me that he wanted all of the information he could have availible to him. The VEP is an easy test, you just have to stare at a computer screen while the fhow checkerboard patterns. I was pretty nervous about the LP, but the procedure itself was not too bad. The only pain was when they numbed the area. I didn't fell anything after that. Unfortunately, I was one of the few that got a horrible headache after the procedure, but they went and performed a "blood patch"and I was good to go after that.
Anyway, I just wanted to reply and let you know that there are others who are in similar shoes and that you can ask me anything.
-Amy
Hi, I am Quix, a physician in a former life, I also have MS. The LP and the VEP show very different kinds of information. The VEP is very specific for damage to the optic nerve only. Optic Neuritis is quite common in MS. What it adds to the SSEP is demonstrating another area with demyelination, the classic and most understood damage seen in MS. The LP shows that there is a major immune, inflammatory process going on in the central nervous system.
The LP is going to be postive in a higher number of cases of MS than is the VEP. I suspect that since you have not had any symptoms, you doctor may well want both. If he is considering MS, though he should also obtain MRIs with and without contrast of the cervical and thoracic spinal cord. Spinal lesions would be stronger evidence of MS than either a +LP or a +VEP, I would think (but am not sure)
The hyperreflexia is indicative of a problem in the spinal cord, not in the brain. The slowed SSEP is indicative of an area of demyelination in either spot.
The hallmark of MS is the pattern of symptoms. 85 % of people will have a pattern of symptomatic attacks and times of fewer symptoms or none called remissions. Since you haven';t even had any symptoms at all, the problems were discovered "fortuitously," you would be a a category that I know little about. It is very atypical. I haven't read much about the process of diagnosis in people without symptoms.
You are the second person in the last week or two to have this happen, only the other member had lots and lots of lesions which were increasing. If this is MS (and we don't know at all that it is. No one can diagnose anything online) it shows that the disease can be actively causing lesions often long before any symptoms.
You are probably also pretty scared. You've gotten some good advice above. IF this is MS, remember that it is NOT a death sentence. Many people live very close to normal lives with it, most are not seriously disabled by it. Some do suffer quite a bit of disability, but it does not shorten lifespan. The meds for it are improving rapidly. We can help answer a lot of questions.
Also, we are collecting some of our favorite pieces of information about all facets of MS in our Health Pages. (No, they aren't tips on low-fat diets and exercising, lol). In the upper right hand area of the page you'll see the link for them. There is a lot of reading there which you might be interested in.
I hope we can help you through this! It will all be okay.
Quix
The LP is going to be postive in a higher number of cases of MS than is the VEP. I suspect that since you have not had any symptoms, you doctor may well want both. If he is considering MS, though he should also obtain MRIs with and without contrast of the cervical and thoracic spinal cord. Spinal lesions would be stronger evidence of MS than either a +LP or a +VEP, I would think (but am not sure)
The hyperreflexia is indicative of a problem in the spinal cord, not in the brain. The slowed SSEP is indicative of an area of demyelination in either spot.
The hallmark of MS is the pattern of symptoms. 85 % of people will have a pattern of symptomatic attacks and times of fewer symptoms or none called remissions. Since you haven';t even had any symptoms at all, the problems were discovered "fortuitously," you would be a a category that I know little about. It is very atypical. I haven't read much about the process of diagnosis in people without symptoms.
You are the second person in the last week or two to have this happen, only the other member had lots and lots of lesions which were increasing. If this is MS (and we don't know at all that it is. No one can diagnose anything online) it shows that the disease can be actively causing lesions often long before any symptoms.
You are probably also pretty scared. You've gotten some good advice above. IF this is MS, remember that it is NOT a death sentence. Many people live very close to normal lives with it, most are not seriously disabled by it. Some do suffer quite a bit of disability, but it does not shorten lifespan. The meds for it are improving rapidly. We can help answer a lot of questions.
Also, we are collecting some of our favorite pieces of information about all facets of MS in our Health Pages. (No, they aren't tips on low-fat diets and exercising, lol). In the upper right hand area of the page you'll see the link for them. There is a lot of reading there which you might be interested in.
I hope we can help you through this! It will all be okay.
Quix
You mention the car accident, whiplash and problems with your back. Have you had cervical, thorasic and lumbar spine MRIs?
You could have spinal issues causing your headaches/backaches.
You could have spinal issues causing your headaches/backaches.
I know what you mean about being a shock! I went to my neuro about constant sinus-type headaches and was told "possible MS" after a brain MRI. I had NEVER suspected it. I'm currently un-diagnosed and have been possible MS for over a year.
I didn't know about the LP either ~ I left my neuro in the driver's seat as far as testing initially.
My LP came out negative. The subsequent SSEP, BSEP and VEP have come out normal as well as all my office exams.
The VEP and LP test different things. Be aware that the LP can be negative with MS. There are a small percentage of MSers who never have O-bands and my neuro told me that an LP can be negative in early MS.
I'd call back your doc again if they don't get back to you.
Good luck and I wish you the best!
Pat :)
I didn't know about the LP either ~ I left my neuro in the driver's seat as far as testing initially.
My LP came out negative. The subsequent SSEP, BSEP and VEP have come out normal as well as all my office exams.
The VEP and LP test different things. Be aware that the LP can be negative with MS. There are a small percentage of MSers who never have O-bands and my neuro told me that an LP can be negative in early MS.
I'd call back your doc again if they don't get back to you.
Good luck and I wish you the best!
Pat :)
Thank you for your responses. I didn't know if I should get a vep instead of a spinal tap because it is less invasive. The thing is I went to the doctor about my back and head symptoms a car accident and never expected to be talking about something like MS!
I was in schock and didn't know enough about it or the spinal tap until I started looking on the internet. I tried to call the doctor back for a few questions before my tap on wed but he has not called back and probobly won't.
Do you both have MS?
I was in schock and didn't know enough about it or the spinal tap until I started looking on the internet. I tried to call the doctor back for a few questions before my tap on wed but he has not called back and probobly won't.
Do you both have MS?
Hi, Judy, and welcome!
Pat is right about the VEP info. And you should read Quix's post about O-Bands, too. The thing is, that the two tests give your doctor different information. Did your neuro give you an option between having the VEP or LP?
Having already had the delay with the SSEP, your doc most likely wants to see what info an LP would give. The VEP gives much the same info as the SSEP would. I really think your neuro is trying to nail a diagnosis, and the VEP wouldn't add as much, because of the SSEP you already had.
Are you afraid of having the LP done? I don't blame you. It sounds so scary. I just had one done last Friday, and also had one done in the ER last year. Scary as it sounds, it isn't too bad. The first numbing shot stings a burns a very little bt, and then the rest is really painless. You can feel pressure in your back as they are working around, but it truly is painless after the shot. I think the idea of it is scary. But, I did just fine. Many have here.
The stupid thing I forgot was to stay very well hydrated after the LP. The first time, I got no spinal headache at all. This time I got it -- and how! I ended up getting a "blood patch" done to take care of the headache. It worked, and was much like doing an LP again. It was quick and painless. But, I really think I could have avoided it if I had just kept pushing fluids (2 liters a day the doc said last night), and restricted my activities. The headache is a scary prospect, but somewhat preventable, and usually easily remedied.
Ask your doc why he/she wants these tests, what kind of info they'll give and see what makes sense to you.
I hope you feel well and stick around.
Hugs,
Zilla*
Pat is right about the VEP info. And you should read Quix's post about O-Bands, too. The thing is, that the two tests give your doctor different information. Did your neuro give you an option between having the VEP or LP?
Having already had the delay with the SSEP, your doc most likely wants to see what info an LP would give. The VEP gives much the same info as the SSEP would. I really think your neuro is trying to nail a diagnosis, and the VEP wouldn't add as much, because of the SSEP you already had.
Are you afraid of having the LP done? I don't blame you. It sounds so scary. I just had one done last Friday, and also had one done in the ER last year. Scary as it sounds, it isn't too bad. The first numbing shot stings a burns a very little bt, and then the rest is really painless. You can feel pressure in your back as they are working around, but it truly is painless after the shot. I think the idea of it is scary. But, I did just fine. Many have here.
The stupid thing I forgot was to stay very well hydrated after the LP. The first time, I got no spinal headache at all. This time I got it -- and how! I ended up getting a "blood patch" done to take care of the headache. It worked, and was much like doing an LP again. It was quick and painless. But, I really think I could have avoided it if I had just kept pushing fluids (2 liters a day the doc said last night), and restricted my activities. The headache is a scary prospect, but somewhat preventable, and usually easily remedied.
Ask your doc why he/she wants these tests, what kind of info they'll give and see what makes sense to you.
I hope you feel well and stick around.
Hugs,
Zilla*
Welcome to the forum Judy.
This is what I found on the VEP (from mult-sclerosis.org):
This test measures the speed of the optic nerve. The patient has to focus on the centre of a "TV" screen on which there is a black and white chequered pattern. Each square in the pattern alternates between black and white at measured intervals. The patient wears a patch on one eye for a while and then on the other, so that the speed of both optic nerves can be measured.
85-90% of people with definite MS and 58% of people with probable MS will have abnormal VEP test results.
Quix posted a thread recently on O-bands and the LP. I'll try to find it and bump it up.
After my abnormal brain MRI, my neuro ordered an LP right away. After that came out normal, he ordered the EVPs (BSEP, SSEP, VEP).
Why do you not want an LP? Are you concerned about the procedure?
I'm sure there will be others more knowledgeable here that can give you more info.
Welcome again and I hope you can get some answers quickly.
Take care, Pat
This is what I found on the VEP (from mult-sclerosis.org):
This test measures the speed of the optic nerve. The patient has to focus on the centre of a "TV" screen on which there is a black and white chequered pattern. Each square in the pattern alternates between black and white at measured intervals. The patient wears a patch on one eye for a while and then on the other, so that the speed of both optic nerves can be measured.
85-90% of people with definite MS and 58% of people with probable MS will have abnormal VEP test results.
Quix posted a thread recently on O-bands and the LP. I'll try to find it and bump it up.
After my abnormal brain MRI, my neuro ordered an LP right away. After that came out normal, he ordered the EVPs (BSEP, SSEP, VEP).
Why do you not want an LP? Are you concerned about the procedure?
I'm sure there will be others more knowledgeable here that can give you more info.
Welcome again and I hope you can get some answers quickly.
Take care, Pat
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