These figures that you are quoting of 90% come mainly from weak studies that do not fall into class i evidence! The table of the 7, 14, and 20 year follow up that you are showing had a narrow spectrum of persons with the suspected condition, many of whom were lost to follow up.
Also the baseline scans were made on very old and low resolution mri, with a 10 mm slice thickness, therefore probably overestimating the amount of lesions by today's standards, not to mention a host of other limitations.
Studies like these are not sufficient to be representative of the population and it is for this reason that any good neurologist will not quote such figures to their patient.
In any case the problem, as always is how to individualize the suspected risk and many of these studies may categorize ADEM and CIS differently, and therefore not give the true prognostic picture of a single demyelinating event.
I'm at a loss where I am --- I feel like I fell through some cracks with poor medical care and think I am CIS x three (with 2 undocumented attacks) despite no-one saying so. All I do have are scattered abnormalities on my clinicals, reduced amplitude on VEP and abnormal waveforms, and one lesion in the perventricular region that the radiologist missed but my MS specialist indicated it's "something." lol ~
I have a good doctor right now but it's a waiting game. She's giving me her plan. At the moment, I'm a little concerned with my right hand/arm, it seems to be developing quite the weakness as typing and holding/lifting are become more troublesome. I have a SSEP scheduled soon. I think that should show my right foot/right hand issues if it's a spinal lesion. I think?
I see a Neuro-Ophth to try to figure our my widespread vision issues and unexplainable long term ON symptoms without latency. I am wondering if it was right eye weakness (INO) that was causing the pain on movement and some of the double vision. In my research though, that doesn't explain the constant double vision in both eyes (singularly.) I have color variances between both eys and a scotoma in my left eye where there is a little black dot but also an area where black typing looks saturated. I also have had documented nystagmus.
The other test is for hearing fluctuations and tinnitis that developed in June....then repeat MRI's late this year. Hopefully something leads in the right direction for treatment soon. Should I ask her about CIS at my next appointment? Is that out of line?
My doctor just recently told me I have CIS because of my right side of face and left side of body is numb like its always frozen from going to the dentist. I have to use a walker to be able to walk and have to learn so many things now. He found a lesion at the base of my brain and the seconds MRI showed it swelled. He put me on prednisone and is slowly trying to wean me off it.
After this long knowing me, he (my dr) knows I have never presented anything to him that is just off the wall.......I trust you Quix, and I know you would not post if you didnt believe. Thank you for not be offended. Was not my intent. Drs should know we are going to educate ourselves about something that we may have. Especially something like MS, that is not that well known.
Thank you for acknowledging that 85% is sufficent for DMD. I am going to do these three days of steriod infusions and get back with him on the 19th. See what he says and if I am not comfortable, I will seek MS specialist.
Again, Thank you
Beth
oops, typo - Dr. Timothy Vollmer
Herre is the script for the entire lecture with the slides:
http://peerviewpress.com/files/programs/6212/printtranscript/6212.pdf
You can search for articles by Dr. Vollmer and see that he is right there at the top of what is being taught about MS, CIS and MS treatments.
Quix
Your neuro is right. There is a lot of trsh about everything on the internet and the normal person hardly knows how to evaluate the data. I chose this info because it is from a podcast by Dr. Timothy Vollner, and he is an accepted major authority on the subject. He authors a great deal of articles and studies and is qidely quoted by other experts. He is frequently on panels that decide the type of thing that we are discussing here. I present it to the forum, because it is NOT trash. (Don't worry I am not offended, merely trying to reasuure people that I don't post info that is not well founded in science.)
I will say that the data that I show here is not accepted by everyone. So be it. Some doctors either are not aware of this data or they are not comfortable being so "liberal" in applying well-known criteria to their patients.
In the eyes of the experts that I respect being 85% sure of the diagnosis of MS is completely sufficient to give a DMD, as shown by the data above.
Quix
Very nicely done. As always, excellent info. I guess mine falls into the rare type 4 category. But I think that's because I had many mild episodes over the years that went unreported and undetected. I didn't report any of it to an MD until it was in-your-face obvious. By that time, many things had accumulated.
I actually asked my neuro about this today. He told me not to believe everything I read. I told him I dont read trash! I read FACTS!! He is not ready to commit to MS. Just told me he feels 85% sure MS. He said do these 3 days of steriod infusion and lets see how you feel. You are going to feel better than you have in 5 years!! Ok, great, then what??????????
Bump for all the people who are asking about Clinically Isolated Syndrome.
Quix
DocQ:
You are amazing!
Thanks for such great info.
TimC
I have a question for you Quix. I had what I believe was optic neuritis in 2003. I went to an ophthalmologist and to the ER and neither place diagnosed me. Both places said they didn't know what it was because nothing showed up on physical exam nor on CAT scan. I do however have a CAT scan from 2003 that was performed for eye pain.
I saw a neurologist about two days after my ER visit because I had developed severe vertigo and lost the hearing in one ear. I was in such bad shape physically and mentally that I didn't mention the eye pain that I had to him, at least I don't remember mentioning it. I was so focused on my vertigo and was so scared about the hearing loss that those two things were all I could focus on. The entire back side of my body went numb also and I don't believe that was entered into my history but that was the neuro's doing. I told him about it but he told me he had no idea what that could have been and wrote nothing on my chart.
My question is this...since I didn't receive an actual diagnosis of optic neuritis and my numbness was not entered into my chart does that mean that I now have no way of having those entered into my medical history? How does that work?
I ask because I believe I experienced a CIS at that time.
Thank you for any time you can give to my question.
This is an amazing amount of information. Thank you so much, Quix!!!
Thanks for the information... I have to admit with the cognative issues I have I could not tell you any of what I read :) But... I do remember thinking what a great bunch of information as I was reading it. Thank you for all the time and effort you put into educating us. I haven't been on in a long time but as weather gets colder and my parents head south I will engage more and more. Stay well and Thank you again for all you time and hard work :)
Debbie
~live as if all your dreams came true~
HI all,
I read every bit of this article and found it really interesting even though most of it has whooshed over my head now and I cannot remember the specifics.
What I would be interested in knowing is the size of lesions over time. Let us say for example someone had a CIS 8 to 10 years ago how big would their lesion be on their MRI today? Are we talking tiny or bigger? Or is this one of those things which is different for every person?
I have 8 brain lesions and 1 spinal lesion. I started with headache and ear pain. Now I still have daily headache 6mths later. Vibrating in my hip, Hip pain, Numb heel, Weakness on my right side. Neuritis in my left eye 3 times in as many months, Dizziness, Fatigue, My feet feel as if they are being crushed when standing. It stinks but I know alot of people have it worse than me so I should not complain. I appreciate all the knowledge you give us. I want you for my neuro;-)
Quix
This is a great article. Thanks very much for taking the time and effort to explain all this.
I'm feeling really sad though. Most of my sx, if not all, are in the criteria and lists. With multiple episodes over many years. You could say I've had chronic CIS! LOL Sx are, of course, progressing.
All but a couple of doctors have ever taken my sx seriously. Tests have been grudgingly done - mostly the wrong ones (like, substituting a chest xray for a planned lumbar puncture when there are absolutely no indications of thoracic disease and multiple cns sx!). Most docs have dismissed, some have been downright rude.
It took a new, young female doc to insist on xrays/scans. The first of which has shown...as I knew all along...significant vertebral disease with other 'abnormalities that indicate need for further scans (always a bit concerning when radiological reports are terse and hastily refer you for more scans in capital letters!!).
My point is that my sx haven't demoralised me, they need not have disabled me. What has totally demoralised and disabled me is the arrogant, dismissive attitude of doctors.
But this is general in the UK, I think they are taught at med school that F pts are nasty, mysterious creatures who spend their whole lives ruminating on getting some disease or other so they deserve nothing but the worst!
Hugs
sammxx
by dragon_flies, Jan 10, 2010 02:26PM
That was really interesting.
How do neurologists consider attacks that a patient had before coming into their care? As in, would I have to come to the neurologist when I'm having symptoms, wait for them to go away, and then return the next time I have symptoms in order to get a definite diagnosis? Or could they consider the numerous episodes that I've had in the past, and the symptoms that I'm having at present, and use that to determine dissemination in time? (I don't know if that makes sense - but I'll try to clarify if you want me to!) Would they likely diagnose me with CIS because this is the first episode that they're seeing, or just trust me when I tell them about the many previous times that I've had symptoms?
dragon_flies, that's a really good question. I have often wondered about this. Anyone?
That was really interesting.
How do neurologists consider attacks that a patient had before coming into their care? As in, would I have to come to the neurologist when I'm having symptoms, wait for them to go away, and then return the next time I have symptoms in order to get a definite diagnosis? Or could they consider the numerous episodes that I've had in the past, and the symptoms that I'm having at present, and use that to determine dissemination in time? (I don't know if that makes sense - but I'll try to clarify if you want me to!) Would they likely diagnose me with CIS because this is the first episode that they're seeing, or just trust me when I tell them about the many previous times that I've had symptoms?
This was very interesting reading.
I have read up a lot on CIS and risk of conversion to clinical MS but this is definitely the most detailed information I have read and the easiest to understand.
It also puts me at higher risk than I thought (I am diagnosed with CIS with 4 lesions, 2 on my brain and 2 on my spine), but I like to keep informed and up to date so I have some idea of what to expect.
As I am in the UK DMD's are not an option for me but I am generally fit and well, only very minor problems so far.
For me it is 3 years since my initial attack (severe paresthesia around the spine). Although I have had other small problems that might have been considered a relapse, they were not typical and no change on MRI so there was nothing that would give me a diagnosis of MS. So its the waiting game as it is for many people.