No enhancing lesions = MS not active so only pseudoexacerbations?

[crampskin]

My neurologist says that the symptom flareups I've had since 2010 are only pseudo-exacerbations because the MRI I had in 2010 showed no enhancing lesions so the MS isn't active. Thoughts?

[crampskin]

My original answer also disappeared into the ether. It's ok. I just really wanted to say thank you. I am now armed with info to go back to my neuro and say "they aren't pseudoexacerbations and we need to talk about some of the newer DMDs! Making the call today! Thank you!

[Quixotic1]

Well, I had a whole lovely reply to send, but it went off into the ether to land someday on someone's computer and confuse the heck out of them.

My dear, I am sorry but you being given a bogus answer for why it is okay not to treat you with a DMD.

A relapse is not and never has been defined by the appearance or change in the MRI!  It is DEFINED BY THE BEHAVIOR AND CHANGE OF THE PERSON'S SYMPTOMS.  Everyone read that last sentence again.  All of the people who have responded to you are correct.  

This neuro is justifying sitting on the fence and not treating you appropriately with a ridiculous explanation.  It is possible that, because of the active Herpes I, you are at greater risk for encephalitis with any of the other newer meds.  I don't know.  I do know that I have to skip my Tysabri infusions whenever I have an active lesion (less than once a year).  But I can go back to them the next month.  When I was getting them more frequently, he would have me take Acyclovir through and for a week after the infusion.  I would like to know what my own neuro thinks, as he is aggressive in treating and is a Tysabri researcher.  I have now had about half a dozen herpetic bouts and am approaching my 3-year mark on Tysabri.

There are now 10 meds approved for use in RRMS.  Has your doc really ruled out each of them??

A pseudo-exacerbation is defined also only by symptoms and never by reference to the MRI.  It is an appearance of new symptoms or resurgence of old ones on a temporary basis (usually less than a day) caused commonly by a change in the core temperature of the body.  This may be internally caused by exercising or externally caused by a hot environment.  The symptoms resolve when the cause of the problem is corrected and the body can cool down again.

An MRI-invisible lesion can cause a new symptom, and thus a relapse.  The MRI is merely an imperfect (Yes, strike me down!) tool used to add to the understanding of a person's symptom pattern.  When enhancing is seen, it is useful for backing up what the patient reports, but no one of any regard in the MS field suggests that it is the all and be all of defining a relapse.

So have a really heart to heart talk with your neuro about the newer meds or the simultaneous use of an anti-viral (to which herpes DOES respond) or ask for a 2nd opinion about whether or not your history of active herpes ulcers really rules out Tysabri or the new meds.  Also you might ask a new doc about whether you are truly in the SPMS category.

Quix, MD

[kwarendorf]

Hi CS-
This neuro sounds like a peach! I too am fascinated by MRI's that have a crystal ball feature. How can he comment on events between 2010 and today based on an image frozen in time in 2012? And why won't he discuss Tysabri? My initial DX was SPSM and my doc went right to it!

I think it may be time to evaluate your neuro options.

Kylw

[crampskin]

I accidentally hit best answer for immisceo when your's actually was. Anyway, more about my situation:
I was dx w/ benign MS in 96. I guess we all know that's not reality. The neuro who dxd me also said that "MS doesn't cause pain and it won't affect your thinking." This despite that fact that I presented with cognitive issues.

Anyway, since about 2011 I've had what I perceive as a a gradual loss of function. Some of it, like weakness, I realize is probably age (I'm 53) and inactivity related. But, I've also had
* hand and feet "seizures" (as a not-my-neuor dx'd them) where my thumb or fingers get charley horse like cramps and pull apart or into my palm (I have Dupuytren's disease, too but it doesn't cause this sx),
* tremor in my right pointer finger that has spread up my entire right arm, episodes of worsening fatigue (can take 15 mg of Adderall and fall asleep within 20 minutes),
* episodes of walking backwards instead of forwards on first step when walking,
* episodes of hesitation on first movement (ie first step down, first attempt to get up from a chair),
* increasing cognitive problems including forgetting how to spell and grammar rules (I was a copy editor), writing letters backwards, using completely wrong words (ie North Dakota for knees, 2 and a half for 2:30), and losing track of what I'm saying mid-sentence

My mom was diagnosed with dementia in 2011 and died in 2011 and I've been severely depressed since - was hospitalized for 8 days in February of this year. I've been deeply depressed before but was always able to get out of it with anti-depressant, CBT, and shear will power. Not happening this time. In fact, psychiatrist is a bit perplexed that we can't find a combo of drugs to work. I know MS can cause depression in 2 ways - reactive and the disease itself.

I guess, in truth, in doesn't really matter what my neuro calls what's happening. I'm not on a DMD (tried Copax - allergic, did Avonex faithfully for 4+ years, then tried again for a year - terrible side effects the 2nd time - 3 day flu; have active herpes (cold sores) so not a candidate for the ones that have potential herpes encephalitis as possible side effect, neuro won't discuss Tysabri and hasn't offered anything else; suspect I'm secondary progressive but too scared to ask). And it won't change anything. I just want to know what's real. After years of being called a hypochondriac I guess I'm a little sensitive ;-).

Thanks for the help. I'm actually going to ask for a new MRI. I think that's a reasonable request after 4 years.

[essdipity]

Wow, this sounds so much like my new neuro (not by my choice--last one left for very high-profile job).

This one says that my major flare symptoms are only a pseudo-exacerbation because MRIs have been stable and symptoms are not exactly new, just much worse variations on an old theme. I have never before heard this version of pseudo-exacerbation versus genuine exacerbation. All I know is 'this thing' has been going on for 3 months now with no end in sight. Not a question of symptoms that get worse in certain circumstances (possibly extreme heat, etc.)  that disappear rather quickly when the circumstances change.

He does not claim, however, that lesions need to show as active (I guess meaning new) on MRI for my symptoms to occur. Instead he says that my brain, which is pretty much a mess MRI-wise, though not worse, usually is able to compensate for all my symptoms and find a way to more or less suppress them. But when I my body is under exceptional stress from some cause, which currently means very bad allergy effects and very possibly a newly developing auto-immune process not related to MS, my brain cannot continue to compensate, and so all hell breaks loose.

This is an interesting idea, but I can't find anywhere evidence that it is more than a theory. Nothing I can do about it though, so I'm just dealing with the symptoms, mainly via large doses of Gabapentin.

Most authorities agree that MS is *always* active, even when there are no obvious symptoms. I talked to him about gray matter in MS, and he does state that MS is at work there too, but naturally there's no way to demonstrate that unless we get to the autopsy stage.

Can you give us a bit more info about your situation?

ess