"you have MS, but no clinical diagnosis."

[kwarendorf]

I've read the following, or some version of it, twice today.

"you have MS, but no clinical diagnosis."

Has anyone else heard this from their doctor? ANyone know what his means?

Just curious.

Kyle

[supermum_ms]

Hey great discussion, I actually like this article (see below) because it's simple to understand, it discusses diagnostic issues including DIS and DIT and provides some solutions, its definitely worth reading......

http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/full

My simplified understanding on the subject: A person 'meets the criteria for CDMS' and doesn't require ANY additional evidence, IF they have corroborating evidence of having had '2 or more attacks', which are determined by....

A) OBJECTIVE MRI evidence of.... 2 or more lesions in 'at least' 2 out of the 4 specified locations (Periventricular, Juxtacortical, Infratentorial or spinal cord)

OR

B) OBJECTIVE CLINICAL evidence of.....1 clinical lesion with 'reasonable' medical historic evidence of 'a' prior attack

When it comes to interpreting the DIS/DIT requirement, at it's simplest this should only be a factor IF the above isn't clearly A or B above, so additional evidence is required for CDMS.

When the patient is 'B' so they only have objective clinical evidence of having had 1 attack, and they DON'T have (can be subjective neuro's opinion?) 'reasonable' medical historic evidence of a prior attack - IF their MRI does have 'both enhancing and none enhancing lesions' [2 or more lesions in 'at least' 2 out of the 4 specified locations (Periventricular, Juxtacortical, Infratentorial or spinal cord)] That is enough 'additional objective clinical' evidence of both DIS/DIT and they then DO meet the requirements for CDMS.

Enhancing lesions are 'not' required for dx, but they do help simplify and shorten the dx process, you really only need 1 MRI, if your lesions are located as per the criteria and or some actually enhanced and others didn't.

Logically, if a patient has multiple brain lesions and or spinal cord lesions in the right locations, then it doesn't matter if non enhance or if they don't have reasonable' medical historic evidence of 'a' prior attack........... because it would be statistically mind boggling to get 'multiple' lesions in the right 'multiple' locations, and ALL at the same time! It's more logical and statistically viable of it being objective clinical evidence of them have had multiple attacks.

Most of the time I simply don't understand, with the simplifications of the Mcdonald, why its still more common to 'wait and see' - which could be neuro speak for 'I' need more MRI evidence or 'I' need you to be functioning less able, before 'I' can be comfortable dx you with MS.......where's that neon sign when you need it lol

Cheers...........JJ  

            

[karryon55]

Hi Kyle,

My first MRI was on a 1 tesla machine without contrast which was about a year ago. I had one in August on a 3 t machine & again just recently in Jan where there was no change. Neither had any enhancing lesions or any new lesions. There is something else happening in the thoracic cord but it wasn't clear on the MRI what it was. However there are differences from the first ever MRI but it could be down to the use of a smaller machine.

My Neuro is not worried about this & will just do repeat MRI's in the future. I won't be having a LP at this stage. I have fusion in the spine (ankylosed) & it was attempted about a decade ago but it was impossible to gain access.

I am thinking my Neuro is watching to see what kind of MS is happening as well. I have symptoms daily & don't appear to have had any relapses yet. It is also difficult to get MRI's when you need them with there being at least a months wait but first you must get into your Neuro which could take months as well.

The diagnostic criteria is extremely confusing & it makes my head ache lol. There are criteria's for everything including RA but I must say the McDonald criteria is a lot more complicated to understand than the average.

Karry.

[essdipity]

Yours is a case where an enhancing lesion (one of your 2) would have made diagnosis much easier, and could have made LP unnecessary. However, we seldom seem to get the MRIs at just the right time. Scheduling, etc., fouls things up.

[Corriel]

Eek! Somehow posted without posting.  Lol.

Got the LP, had multiple obands and triple the normal inflammation so he gave me my dx then.

[Corriel]

Interesting! When I saw my neuro for the first time, I had experienced 2 attacks, had 2 qualifying lesions, a clean CT (my dx at this point was a stroke) nothing that stood out in blood tests other than low b12 and my neuro said he did not suspect MS because I was not presenting "typically".

He officially ruled out strokes including small vessel ischemia with more blood tests and said I could wait a year, try another MRI, or try a spinal tap then. No MRI with contrast or c-spine was asked for. I opted to do the LP and

[essdipity]

I had a bunch of old brain MRIs ordered by wimpy neuros who dithered. But when held up to a light box (films) together, progression was pretty obvious.
The trouble was, some neuros couldn't decide progression of *what*. I was left with probable MS for a good while, till the good news/bad news scenario happened: brain atrophy over time that couldn't otherwise be explained.

[kwarendorf]

The difference seems to be that the chart bases the need for DIS, and or, DIT on the number of attacks ad the number of lesions found.

In my case I made things easy for them; enhancing and non-enhancing lesions in both brain and c-spine! A DIS/DIT two fer in a single set of MRIs :-) For gravy I threw in >5 unique o-bands in my CSF ...

[essdipity]

Ouch! Know how you feel--my eyebrows hurt.

Anyway, having found charts a non-starter, I thought I'd try something less technical than a NIH research report. Found this on the NMSS site:


The Criteria for a Diagnosis of MS

In order to make a diagnosis of MS, the physician must:

    Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
    Find evidence that the damage occurred at least one month apart AND
    Rule out all other possible diagnoses


This seems to be the AND answer, but I am officially not responsible for any errors resulting from brain-deficiency anemia.  :-)

[kwarendorf]

And I'm text challenged. I tried reading the NIH page but my hair started to hurt :-)

[essdipity]

Beats me. Besides, I'm chart-challenged.

Anyone?

[kwarendorf]

This gives us an indication of what docs are up against :-)

My reading of the NMSS chart says that both DIS and DIT are required only if there has been one attack and one lesion found.

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&ved=0CEEQFjAC&url=http%3A%2F%2Fwww.nationalmssociety.org%2FDxTipsheet&ei=y-XrUoqxE-musATUlIGYBQ&usg=AFQjCNHKnwkhouc54irKeIf17JrAexN6zw&sig2=-BtPyf8SWRHHwGgCIIJPLw&bvm=bv.60444564,d.cWc&cad=rjt

If there is one attack and two lesions are found then DIT is needed.

If there have been two attacks but only one lesion is seen then DIS is required?

[essdipity]

I always thought it was both space and time, but seeing your post made me wonder. It can be confusing, to say the least. I looked it up, not using that chart, but in prose, which is much easier to understand.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084507/

This is from NIH, so is reliable. They say both standards are needed.

ess

[Joiedecour]

Interesting. I didn't get that, but kind of the inverse at last but one appt, actually from the record I requested  after appt. There he'd written if something else  happens, diagnosis changes to clinically definite, which is interesting because I wasn't given a dx for it to change!!  As of last appt I am being told there is nothing wrong with me and it's not MS. Weird fish these neuros.

[kwarendorf]

I think for McDonald purposes you may need to satisfy dissemination in space OR dissemination in time but not both.

If you have clinical evidence of 2 attacks and 2 distinct lesions you don't require any further evidence.

Kyle

[Tumsie]

Yep! That sounds about right! Neuro kinda said that but my physician looked at my MRI etc and said 'Its MS', believing that I have MS has helped me understand what I'm going through better...till I go abroad to see another neuro..I have MS.

[karryon55]

I found out just recently that I don't fit the DIT part of the criteria but have completely covered the DIS. This is because I have been on treatment 5.5 years before dx. I also only have 5 months of MRI which was unchanged recently. My Neuro is obviously stuck between a rock & a hard place with me but I completely understand. He believes I have MS & that is enough for me. I know in time I will reach the DIT part of the criteria but I am happy to have a stable situation at the moment. It's not something I need to worry about because I'm on treatment that is working very well.

What I don't get is my first MRI was on a very small machine without contrast & that didn't show up a lot of what is on my current MRI. This is put down to the difference in the machines but why can't they just say "this spinal cord & brain stem lesions weren't here before so we have DIT?" I mean seriously it would have been nice if they could look at it that way rather than it COULD have been missed because the machine was smaller.

Karry.

[kwarendorf]

I brought it up to facilitate rambling :-)

[Lulu54]

It means all of the above!  There is a faction in medicine that has stopped using their brains and observational skills and then relies on test and MRI results to call it.  As we know, with MS it just isn't that simple for most people.  The neuro can see just enough to know that eventually all the pieces will come together, but hesitate to call it until the picture is complete.

I wonder how much of this unwillingness has to do with the influence of knowing the financial toll of MS - both to insurance companies and the very personal terms for the person with MS. Once that label is put on a person, it will never go away.

This is rambling, Kyle, but I hope something in this makes sense.

[maxthecat43]

They know you have it, but can't prove it with the McDonald Criteria yet.

[Guitar_grrrl]

Sounds like a cop-out on the neuro's behalf.  It's such a counterproductive statement.  The consensus among the top neuros is to treat early, even with CIS.  Whoever is being told this needs to find a new neuro.  It's like being pregnant - either you are, or you aren't.

[HVAC]

I got this for two years. It stumped me. I thought you either have MS or you don't. I almost stopped going to Neurologist but one told me I could not because I would be diagnosed with MS.

Alex

[essdipity]

It means, 'You have MS, but I don't have the _____ to say so officially, because your case is not *exactly* like the ones I read about somewhere,

ess