Non-Specific - Specific

[Sidesteps]

Ok- this is a vent. I apologize in advance but my annoyance factor is high.

I have been trying to figure out this "non specific" comment that the radiologist referred to in my MRI report. I really am trying to find my own reasons for why I am left here with obtuse lack of clarity on where I am at but... all I keep coming up with is ---- early MS --- and I'm annoyed now.

I went to "radiologst assistant" which is the common place you can see pretty clearly the differences in lesions. I have lesions in my left temporal lobe, in the juxatorial area (superior frontal gyrus) and in my corpus callosum.

Per the radiologist assistant" the temporal lobe is SPECIFIC for MS in the early phases.
Typical MRI findings in MS
Temporal lobe involvement is also specific for MS.
In hypertensive encephalopathy, the WMLs are located in the frontal and parietal lobes, uncommonly in the occipital lobes and not in the temporal lobes.
Only in CADASIL there is early involvement of the temporal lobes.

The lesions in the deep white matter (yellow arrow) are non specific and can be seen in many diseases.

Juxtacortical lesions are specific for MS.
These are adjacent to the cortex. They must touch the cortex.
Do not use the word subcortical to describe this location, because that is a less specific term, indicating a larger area almost reaching the ventricles.
In small vessel disease these juxtacortical U-fibers are not involved and there will be a dark band between the WML and the (also bright) cortex (yellow arrow).

Typical for MS in this case is:
•Involvement of the temporal lobe (red arrow)
•Juxtacortical lesions (green arrow) - touching the cortex
•Involvement of the corpus callosum (blue arrow)
•Periventricular lesions - touching the ventricles

I have FOUR of those "non specific" (insert sarcasm) and possible ALL FIVE!!! Gosh, I am really frustrated. Deep breath.

[Sidesteps]

Thank you both for listening to my /rant. I am frustrated the last couple days as I gather all my tests to send them to the other doctor for my 2nd opinion. It's hard. I'm trying.

My problem isn't even the diagnosis truthfully. I have been told mixed messages and I'm left here thinking "Okay, it's early or benign MS but the lesions aren't causing my symptoms and I'm stable?"

WTH?!?!? (said with SS looking like an emoticon with her eyes rolling around and a question mark about her head. lol)

I asked my doctor a round of questions as follows: "I apologize for the inconvenience but I am troubled by this year and half of symptoms without explanation as to the possible cause. I thought lesions in different locations might be the explanation so I want to clarify. My questions: If my latest labs come back negative, if this isn't MS what could it be? What causes lesions and these symptoms that we haven't ruled out? Are there more tests we should do?

The response was for her to forward the radiologist the question "Do you agree that the scan is stable?" This is what the radiologist said: "The difference between the current scan and the prior exam are likely due to our thinner acquisition and the 3T making small subcortical foci more conspicuous."

These were a complete non-answer. In looking at the radiology report it is specifically nonspecific. lol ~ I'd been happy with "Yes, lesions can cause these symptoms. These are our options right now. We need to monitor you closely for this reason. " I should have been given the opportunity to be explained the reasons for being where I am.

....and I really hate the added statements of "it could be benign." If it was benign, I'd not be feeling this way every monthly cycle, when I exercise, sit in the sun, take a shower or even remotely feel sick. I'd not notice any chronic damage but I sit here with blurriness in one eye, tremors, twitching/jerking, tight muscles, eye orbit facial numbness, eye pain, facial pain, wobbly eyes and a mild foot lag/drop.

I really don't care if I'm told point black it's MS or not MS. I had lived in limboland prior to that. It would be okay to stay in limboland to meet the criteria for the reasons above. I would want to have the correct diagnosis. With CIS, this should should have been laid that out there for me.... the CIS and the lesions do clinically correlate.

The problem is I'm being told it is but the lesions aren't causing my symptoms (and I don't understand that even under direct question I'm getting "stable" and a request from the radiologist to clarify stability.)

The real issue is being told ambiguous statements. I'm sorry guys... I don't like to be where I am at mentally. I'll snap out of it.

[LisaJF]

Shell, well said.  

That is why I am glad no one is jumping to a diagnosis so quickly for me, although I find it frustrating because I have the "need" for an explanation.

I think it is frustrating when all things were ruled out from endocrinology, rheumatology, cardiology...well screw it....lets just say all systems of the body and not too many things remain left save for MS.

I'd be happy with my doctors saying, "Chronic Fatigue Syndrome" secondary to EBV/Mono and idiopathic neurological symptoms secondary to post viral syndrome.  I can't even get that and its been since June 2010 that I've been suffering fatigue!

It's amazing what people go through.

Lisa

[sllowe]

Hi SS,

Just to add some perspective here...Don't forget imaging is only one piece to the puzzle.  Classic MS lesions by way of radiologist reports are not always MS, and non-typical lesions sometimes are. MS is a serious, and difficult disease to diagnosis.

No one will receive a true dx of MS due to a radiologist report. And, if they do, it should be seriously questioned because MS is a clinical diagnosis. i.e., not all lesions = MS.  

Hope this helps,
-shell

[LisaJF]

I understand your frustration when you see "proof in the pudding" so to speak and everyone else (medical professionals) are just indifferent to the entire picture.  One speaks of possible MS, the other speaks of nonspecific lesions although your lesions are in areas that do not belong in the areas of the brain in where you have them, the other says non-active MS.

You want them to $hit or get off the pot....I do understand.  Even myself, I have unwillingly went through my MRI CDs to "really" look because anytime I had personally seen any of the Neuros go through my MRI's they were flipping through them in split seconds.  I had to take my time to go through them because Im NOT qualified to read MRIs at all.  Although I'm not qualified, I think I have a few photos that I would like to call to the Neuroradiologist's attention and ask him what he feels about the ones I have in question.  But I most likely wont.  Who wants to point out to a person who went to school in this profession, something that they possibly missed?

Perhaps what I have is not good enough either to formulate a diagnosis.  But I do know one thing SideSteps, EVENTUALLY, in the end.. I will have an explanation -- So will you.

Hang in there kiddo, you're doing a great job advocating for yourself.  

There's no law against you calling the Neuroradiologist who read your report and ask him to call you back when he has a few moments so you can ask him questions relative to what you were saying. (Meaning know which MRI (year), what sequence (sagittal flair, Axial T2, etc) and what slice number), this way, he can pull up the MRI in question and you can prepare your questions in written form and ask. What can it hurt? I don't know if the Neuroradiologist would speak to you or not, but at least you tried?

Just a thought.

Lisa

[Red_Star]

Medicine is frustrating. :)

The McDonald Criteria:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36