Aa
saw the MS specialist....so upset!
I went to the MS specialist on Friday, he reviewed all the testing I had done prior to my visit, did a very thorough exam and spent alot of time with my husband and I. He ordered a VEP test which we had done after my appt. He said he felt my tests were borderline 4-obands and 4 lesions, however my symptom were conclusive with MS he felt like the VEP was essential to make a definitive dx. He stated that if he had to testify in court on my case, he would testify that I have MS. Anyhow he called last night and informed me the VEP was normal and at this point feels that I should have another MRI since mine was 6 months ago. If there are no changes then his reccomendation is to wait and watch. He said it may take 2-3 years until my disease progresses to the point where I will get a definitive dx. I have been crying since I got off the phone, i really dont know how to continue on like this. I was so hoping for answers and feel so deflated!
I have put in a call to my Neuro this morning to get my MRI scheduled ASAP and to schedule an appt with her to discuss my appt with the MS specialist. We are looking into getting into another specialist in Utah.
@ Sidesteps -we originally beleived that my symptoms were caused by the Chiari Malformation so we traveled to Denver to be seen by a Chiari specialist, Dr. John Oro, a leading expert in that field. He determined that the CHIARI was borderline and ruled out that being the cause of my issues.
I would say this is my first major "flare" however I did have one other one in Dec/Jan earlier this year.
We have been searching for this answer for 6years now. That was the first time I lost my vision.
Thank you so much to everyone!
@ Sidesteps -we originally beleived that my symptoms were caused by the Chiari Malformation so we traveled to Denver to be seen by a Chiari specialist, Dr. John Oro, a leading expert in that field. He determined that the CHIARI was borderline and ruled out that being the cause of my issues.
I would say this is my first major "flare" however I did have one other one in Dec/Jan earlier this year.
We have been searching for this answer for 6years now. That was the first time I lost my vision.
Thank you so much to everyone!
Hi Bagheesmom,
I'm sorry you have no definitive answer yet :(
Know you must be terribly frustrated. One key to keep in mind is that this is a bear of a disease to dx. It's not one that the doc will take lightly. So, if the specialist is not thoroughly convinced MS, then there must be good cause.
Positive testing does not always = MS, and
Negative testing does not always = Non- MS. That's crazy to wrap our heads around, but it's true. It's a clinical dx.
While this probably provides no comfort, the flip side is being treated for something incorrectly. Because you are with an MS Specialist this doc will be versed in all the other possibilities. And, there are alot. If you type a search in our forum search engine for "differential diagnosis" you will see why it's so hard for these docs. And, equally frustrating for patients.
Hope something reveals itself to your doctor :)
(((Hugs)))
shell
I'm sorry you have no definitive answer yet :(
Know you must be terribly frustrated. One key to keep in mind is that this is a bear of a disease to dx. It's not one that the doc will take lightly. So, if the specialist is not thoroughly convinced MS, then there must be good cause.
Positive testing does not always = MS, and
Negative testing does not always = Non- MS. That's crazy to wrap our heads around, but it's true. It's a clinical dx.
While this probably provides no comfort, the flip side is being treated for something incorrectly. Because you are with an MS Specialist this doc will be versed in all the other possibilities. And, there are alot. If you type a search in our forum search engine for "differential diagnosis" you will see why it's so hard for these docs. And, equally frustrating for patients.
Hope something reveals itself to your doctor :)
(((Hugs)))
shell
ps: the MacDonald Criteria says that dissemination in space can be demonstrated by MRI or a further clinical attack involving different site.
Agreed that in MS, dissemination in space means at least two different parts of the CNS are affected.
This does not necessarily mean that lesions in multiple areas will necessarily show up on a MRI scan, and this alone does not preclude the possibility of a dx of MS.
AhabKara, in another post you mentioned many symptoms that may reflect lesions in multiple locations. One that stood out for me was the banding you described. This can be due to MS lesions on the thoracic spine, which is a difficult area to get a good image of. I've had a t- spine MRI and though it didn't show any abnormality, my neuro has always said I've had a thoracic attack based solely on my description of the banding symptom, and in consideration of my other symptoms, and visible lesions in other areas.
The advancement if the MRI has made it easier to dx MS, but it's a mistake for a neuro to rely too heavily on them in the presence of other compelling evidence.
Remember, MS was being diagnosed long before MRI existed.
This does not necessarily mean that lesions in multiple areas will necessarily show up on a MRI scan, and this alone does not preclude the possibility of a dx of MS.
AhabKara, in another post you mentioned many symptoms that may reflect lesions in multiple locations. One that stood out for me was the banding you described. This can be due to MS lesions on the thoracic spine, which is a difficult area to get a good image of. I've had a t- spine MRI and though it didn't show any abnormality, my neuro has always said I've had a thoracic attack based solely on my description of the banding symptom, and in consideration of my other symptoms, and visible lesions in other areas.
The advancement if the MRI has made it easier to dx MS, but it's a mistake for a neuro to rely too heavily on them in the presence of other compelling evidence.
Remember, MS was being diagnosed long before MRI existed.
Sorry, one more question: In your opinion, If I have two lesions and two attacks, do I still need another lesion in a separate area to meet the McD criteria?
Yup- you need one other definitive location.
Did you see a Neuro-Ophth? I highly recommend with vision issues, you seeing a Neuro-Ophth. They have more specific tests (in some offices) that show decay of your Optic Nerve. This test is called the OCT.
I had this done and it reflected atrophy of the optic nerve that was atypical for my age. All this are good things to continue your testing and in some cases, more than once, I had the OCT and VEP done more than twice over a several months due to my extensive vision symptoms.
Did you see a Neuro-Ophth? I highly recommend with vision issues, you seeing a Neuro-Ophth. They have more specific tests (in some offices) that show decay of your Optic Nerve. This test is called the OCT.
I had this done and it reflected atrophy of the optic nerve that was atypical for my age. All this are good things to continue your testing and in some cases, more than once, I had the OCT and VEP done more than twice over a several months due to my extensive vision symptoms.
I read that the peri area was kind of a classic MS hotspot--so my understanding is that I need a lesion in one of those other areas or in my spine to get dx'ed. Thanks Sidesteps!
Yes - that is exactly what it means. There are MS "hot spots" which in my mind doesn't really mean "typical" locations for MS but more that there are less likely areas that other things will attack --- like migraines, lymes, lupus. These hot spots tend to be corpus callosum/dawsons fingers, brainstem, cerebellum, u-fiber's, temporal lobe, optic nerve and spinal cord. Periventricular lesions and front lobe lesions could be many various causes so they are going to look for MS attacking those hot spots.
While this is information is a little outdated, I think it will give you a good idea what they are thinking about when evaluating patients and MRI's.
http://www.radiologyassistant.nl/en/4556dea65db62
Also, I would consider finding a specialist that really know Chiari 1 Malformation. I would like seek a specialized Neuro for each area with this.
There are many things here that sound much like your Neuro symptoms.
http://chiaricare.com/Chiari-1-Malformation/Symptoms.aspx
Hang in there... my suggestion is cover ALL basis assertively. Keep your current Neuro and follow up with appts but schedule a 2nd opinion with the BEST doctor you can find. I had to leave my county too for a non-biased opinion!
While this is information is a little outdated, I think it will give you a good idea what they are thinking about when evaluating patients and MRI's.
http://www.radiologyassistant.nl/en/4556dea65db62
Also, I would consider finding a specialist that really know Chiari 1 Malformation. I would like seek a specialized Neuro for each area with this.
There are many things here that sound much like your Neuro symptoms.
http://chiaricare.com/Chiari-1-Malformation/Symptoms.aspx
Hang in there... my suggestion is cover ALL basis assertively. Keep your current Neuro and follow up with appts but schedule a 2nd opinion with the BEST doctor you can find. I had to leave my county too for a non-biased opinion!
Hi Sidesteps,
I feel so uninformed--could you explain the need for lesions to attack various areas? Does that mean if you only have lesions in the periventricular area, you might not get dx'ed? I did not know that!
I feel so uninformed--could you explain the need for lesions to attack various areas? Does that mean if you only have lesions in the periventricular area, you might not get dx'ed? I did not know that!
Hi, and welcome!
Can tell us about your time-line? MRI reports?
I sort of looked at your posts and it sounds like this was your first "clinical" attack (meaning that this is the first attack they can document) --- the problem is that your lesions need to attack TWO of the four areas (Juxtacortical, Periventricular, Spinal or Infratentorial) and typically, most people, do not have multi-focal attacks and there has to be TWO attacks.
You don't quite sound like you meet the criteria yet which is good and bad (speaking from being in limboland for about 2 years myself.)
I was diagnosed with MS in Febuary after having Optic Neuritis and a clinically positive eye exam for numerous deficits. They didn't even bother with a VEP this time. My largest lesion is in my left temporal lobe --- so once it attacked my optic nerve they could confidently diagnose me.
That said, I also happened to get a 2nd opinion in all this mess from one of the leading MS Research Specialists and she had indicated based on my clinical examination, my MRI and my flare history - she would have diagnosed me over a year prior. I was a mess by the time she saw me. It was not good.
YET, I also just started a new insurance plan (luckily I am dual insured) and recieved paperwork that indicated there was a 18 month pre-existing condition waiting period. That means that my recent diagnosis is not covered under this plan. My medications at about $40,000.00 a year and that doesn't include PT, MT or Nutritional Counseling.
I also strongly feel that had I been diagnosed sooner I might have avoided some damage (though truthfully most of my damage ocurred with my worst flare) had I found the optimal DMD for me. I am not convinced that I have found it yet since it takes months to feel it's full affect.
I'd get a 2nd opinion.
Can tell us about your time-line? MRI reports?
I sort of looked at your posts and it sounds like this was your first "clinical" attack (meaning that this is the first attack they can document) --- the problem is that your lesions need to attack TWO of the four areas (Juxtacortical, Periventricular, Spinal or Infratentorial) and typically, most people, do not have multi-focal attacks and there has to be TWO attacks.
You don't quite sound like you meet the criteria yet which is good and bad (speaking from being in limboland for about 2 years myself.)
I was diagnosed with MS in Febuary after having Optic Neuritis and a clinically positive eye exam for numerous deficits. They didn't even bother with a VEP this time. My largest lesion is in my left temporal lobe --- so once it attacked my optic nerve they could confidently diagnose me.
That said, I also happened to get a 2nd opinion in all this mess from one of the leading MS Research Specialists and she had indicated based on my clinical examination, my MRI and my flare history - she would have diagnosed me over a year prior. I was a mess by the time she saw me. It was not good.
YET, I also just started a new insurance plan (luckily I am dual insured) and recieved paperwork that indicated there was a 18 month pre-existing condition waiting period. That means that my recent diagnosis is not covered under this plan. My medications at about $40,000.00 a year and that doesn't include PT, MT or Nutritional Counseling.
I also strongly feel that had I been diagnosed sooner I might have avoided some damage (though truthfully most of my damage ocurred with my worst flare) had I found the optimal DMD for me. I am not convinced that I have found it yet since it takes months to feel it's full affect.
I'd get a 2nd opinion.
DMDs can be quite expensive, but there are financial aid programs that you can qualify for, depending upon what your income level is and what your insurance will provide.
Personally a neuro who tells you that we'll 'wait and see' is essentially willing to let your disease progress because he's scared to diagnose you.
What I would do first is check with your regular neuro, and make sure you're sent to a 3T MRI clinic for your next set of films. I'd also talk about your fears that you'll be in limbo and still progressing. Good luck, and hang in there!
Personally a neuro who tells you that we'll 'wait and see' is essentially willing to let your disease progress because he's scared to diagnose you.
What I would do first is check with your regular neuro, and make sure you're sent to a 3T MRI clinic for your next set of films. I'd also talk about your fears that you'll be in limbo and still progressing. Good luck, and hang in there!
Here. here, Doublevision.
I keep asking myself how I will feel if my neuro wants to "watch and wait."
I have fatigue, numbness, tingling, horrible painful odd sensations that come and go in my throat, and worst of all, I have balance issues and I am struggling to walk normally right now.
IF waiting would/could lead to more of these types of symptoms, then I do not want that option. I think most neuro's have their patients best interests in mind, but it frustrates me when providers see us as experiments rather than living, breathing people.
I keep asking myself how I will feel if my neuro wants to "watch and wait."
I have fatigue, numbness, tingling, horrible painful odd sensations that come and go in my throat, and worst of all, I have balance issues and I am struggling to walk normally right now.
IF waiting would/could lead to more of these types of symptoms, then I do not want that option. I think most neuro's have their patients best interests in mind, but it frustrates me when providers see us as experiments rather than living, breathing people.
I was thinking the same as Kyle, if not MS can your neuro say confidently this is CIS (since he would 'testify' you have MS)?
I had zero O bands, 1 brainstem lesion and 2 spinal cord lesions. No VEP. Dx'ed with RRMS after 2nd clinical attack.
I'd go for the 2nd opinion. I'd get a copy of the first doc's report, maybe his rationale will be more clear in writing.
While it may be true that in some cases of early MS it's better to watch anD wait, how can anyone guess who might one of the lucky few with so-called mild or benign MS? There is no diagnostic test to make such a prediction. That period of watchful waiting might be the optimum time to begin treatment, before irreversible neurological damage is done.
Can you access a MS specialist at a reputable teaching facility? This would always be my preference for a neuro.
I had zero O bands, 1 brainstem lesion and 2 spinal cord lesions. No VEP. Dx'ed with RRMS after 2nd clinical attack.
I'd go for the 2nd opinion. I'd get a copy of the first doc's report, maybe his rationale will be more clear in writing.
While it may be true that in some cases of early MS it's better to watch anD wait, how can anyone guess who might one of the lucky few with so-called mild or benign MS? There is no diagnostic test to make such a prediction. That period of watchful waiting might be the optimum time to begin treatment, before irreversible neurological damage is done.
Can you access a MS specialist at a reputable teaching facility? This would always be my preference for a neuro.
I understand the 'space time continuum' criteria, but as Jane pointed out. the current findings would seem to support CIS. This could be seen as a first relapse of MS. The choice of whether or not to start treating at this point is subjective.
In part the decision does concern cost. These meds are not cheap. My monthly Tysabri costs are $6,000.00. Fortunately I have good insurance so my out of pocket is limited.
Kyle
In part the decision does concern cost. These meds are not cheap. My monthly Tysabri costs are $6,000.00. Fortunately I have good insurance so my out of pocket is limited.
Kyle
Thank you everyone for your amazing support! It means so much to me.
I have a neurologist and the MS specialist is sending her his reccomendation for another MRI so hopefully I will be able to get it done soon.
The one thing he brought up several times was the cost of the meds and that bothered us because it seemed to be such an issue. That was confusing to me.
We are thinking that a second opinion is the direction we are headed in at this point.
I have a neurologist and the MS specialist is sending her his reccomendation for another MRI so hopefully I will be able to get it done soon.
The one thing he brought up several times was the cost of the meds and that bothered us because it seemed to be such an issue. That was confusing to me.
We are thinking that a second opinion is the direction we are headed in at this point.
Wow, my nuero was the same way "wait and see" it is a frustrating process. My neuro finally dx'd me when there was a lesion that showed up in a common area for MS.
I really hated the "wait and see" theory but what could I do? I just waited until he found what he was looking for. As a previous post said, you could always get a 2nd or even 3rd opinion if it will help ease your mind.
I really hated the "wait and see" theory but what could I do? I just waited until he found what he was looking for. As a previous post said, you could always get a 2nd or even 3rd opinion if it will help ease your mind.
Maybe they are hoping to pick up something on the next MRI to make it more conclusive. Make sure they have ruled out everything else. As I have done research on all of this the last couple of months, it seems like there are so many other things out there that display as MS when in fact it could be something different.
However, I do agree with the others that it might be valuable for a second opinion, in your case. My original MRI showed 7 lesions, and ironically, when the other results came back it showed a positive band count of 7. That, along with a few other things in my test results, helped draw a positive diagnosis. Been one week yesterday since I found out. The waiting game was horrific, and I am sorry you are going through this right now. Believe me, I feel your pain and experienced it myself so recently.
Whatever comes of this, I wish you the best. And remember no matter what the outcome is, you are still you. And no disease can change that. Happy thoughts...:-) Oh, and crying is okay...means your normal. (((hugs)))
However, I do agree with the others that it might be valuable for a second opinion, in your case. My original MRI showed 7 lesions, and ironically, when the other results came back it showed a positive band count of 7. That, along with a few other things in my test results, helped draw a positive diagnosis. Been one week yesterday since I found out. The waiting game was horrific, and I am sorry you are going through this right now. Believe me, I feel your pain and experienced it myself so recently.
Whatever comes of this, I wish you the best. And remember no matter what the outcome is, you are still you. And no disease can change that. Happy thoughts...:-) Oh, and crying is okay...means your normal. (((hugs)))
I just don't get it; 4 lesions (in the right spots) and 4bands seems like more than enough for a dx.
My neuro told me he thinks I have ms based on two lesions! Then again, his wife has ms, so he may be more aggressive in diagnosis. (I am not dx'ed officially yet)
Bagheesmom, I hope this MRI reveals whatever is going on so you can get the treatment you need.
My neuro told me he thinks I have ms based on two lesions! Then again, his wife has ms, so he may be more aggressive in diagnosis. (I am not dx'ed officially yet)
Bagheesmom, I hope this MRI reveals whatever is going on so you can get the treatment you need.
I just re-read your post, bagheesmom. It looks like he's saying to get another MRI now, then decide whether to wait and see. Can you get that done fairly quickly? I'm thinking it might be worth getting the second MRI with this guy to see what comes of it... You could simultaneously work on setting up a second opinion, and then you'd have more testing to bring to the second neuro when you get to him.
Kyle: The difference may be lesion location and appearance. Most neuros want to show dissemination in space and time. However, in some cases this is the difference between a diagnosis of MS and a diagnosis of CIS ("Clinically Isolated Syndrome"). The important thing for the patient to know is that medical treatment is the same for both diagnoses, and treatment of CIS with a disease modifying drug has been scientifically proven to reduce the chances that the disease will convert to clinically definite MS.
A second opinion is always a good idea when the patient doesn't feel comfortable with the plan for treatment. That said, there do seem to be cases where a "wait and see" approach is best since the disease modifying therapies are serious meds that you don't want to take when not appropriate. bagheesmom, I'm so sorry you're going through this. Please know that many here have suffered through limboland and we know it is a horrible place to be. You are not alone.
Was the specialist the second or first neuro you saw? Did he say anything more specific about the 4 lesions on your MRI? Do you think you can get in with another neuro for a second opinion? It seems weird that he flip-flopped so wildly. If he was ready to testify in court, why even send you for the VEP?
A second opinion is always a good idea when the patient doesn't feel comfortable with the plan for treatment. That said, there do seem to be cases where a "wait and see" approach is best since the disease modifying therapies are serious meds that you don't want to take when not appropriate. bagheesmom, I'm so sorry you're going through this. Please know that many here have suffered through limboland and we know it is a horrible place to be. You are not alone.
Was the specialist the second or first neuro you saw? Did he say anything more specific about the 4 lesions on your MRI? Do you think you can get in with another neuro for a second opinion? It seems weird that he flip-flopped so wildly. If he was ready to testify in court, why even send you for the VEP?
I thought according to McDonald Criteria, you would have the diagnosis, unless the Dissemination in space and time yet has to be proven? Lots of people have normal VEP's and have MS. I don't understand...
It's no wonder you're so upset!
Wait until after your MRI and see what that reveals ok?
Hugs to you and sending positive vibes your way!
Lisa
It's no wonder you're so upset!
Wait until after your MRI and see what that reveals ok?
Hugs to you and sending positive vibes your way!
Lisa
Hi there,
I am sorry you are dealing with this.
As a clarification, did you mean you have 4 lesions?
I am sorry you are dealing with this.
As a clarification, did you mean you have 4 lesions?
I would see if you can get a second opinion. O-bands + lesions + clinical exam should be enough for dx. It was in my case. I have never had a VEP.
Kyle
Kyle
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
