Can you have a relapse without actually forming any new lesions?

[bizzylizzy06]

I was diagnosed in '09 & am still trying to decide if what I'm experiencing is in fact a relapse. I get a mri every year & if I'm having an decline in my cognition, physical abilities, etc...& the report always has the same findings..."no new lesions observed". I don't know what's happening when I go from having a decent amount of energy where I can clean up, run errands, prepare & cook meals, entertain my children, walk my 3 dogs 2.5 mi/day, etc...(clarify: I can't do ALL of these things every single day but most of them) The #1 thing I enjoy doing on a daily basis is getting out there & walking 2.5 mi/day at my local city park with my 3 dogs. Facing insurmountable stress every day from not being able to work, raising 2 teenagers & not getting out of the house much, going out on my daily walks is the only way I know how To unwind- it's like getting to push the reset button.

Then, usually without warning, my life comes to a grinding screeching halt...The fatigue that comes over me is so powerful & overwhelming...only thing comparable to it would be if I were in a coma. I don't possess the energy to do ANYTHING except exist! (and even that can feel like an impossible task) Just going to the bathroom is a chore...And walking 2.5 miles? Forget about it! Not on your life is that gonna happen. My speech is affected causing me to stammer, stutter as I'm pausing mid-sentence searching for those ever-so-elusive words I just can't seem to find...

Ugh...It's all just too much. Any time this happens, I notify the doctor, they do an MRI & it always says the same thing..."stable, no new lesions & no activity from the old ones" (or something like that). The time frame from being fine as a frog hair split 3 ways, to feeling like a living breathing corpse then back again feeling like a frog hair slit 3 ways usually takes a longggg couple of months.(yes. I know frogs don't have hair but just go with it)

So my question is...Can you have a relapse without any new lesions forming or any of the old ones lighting back up?
Thanks!

[jreagan70]

Hi lizzy:

Your fatigue episodes fall into a gray area regarding what constitutes a relapse. Your episodes don't fit the definition of a relapse for a couple of reasons:

1. In MS, a relapse is an inflammatory, demyelinating event. Fatigue is a generic, non-MS-specific symptom not necessarily associated with demyelination. So the argument can be made that fatigue -- which is already common in MS when not associated with a relapse -- does not qualify as a relapse.
2. Your MRIs can't find any evidence of new inflammation or demyelination, which rules out a relapse.

So the first question comes up, what's causing your episodes of fatigue if not demyelination?

There are doctors who do consider significant episodes of fatigue to be relapses. So the second question comes up, should a relapse that consists only of fatigue be treated and how?

Not every proven relapse needs to be treated with steroids. Whether your fatigue should be treated with steroids depends on your neurologist's opinion and whether the benefit of using steroids to shorten fatigue (essentially using them as an "energy" medication) is worth the steroid damage you take on. There are many MS patients who crave steroids just for the energy rush it gives them. So that's another risk you run in treating fatigue with steroids, whether or not it falls into the category of a relapse.

Although it's true that the steroids would squelch the suspected inflammation that might be causing the fatigue, the steroids 1) do their own damage and 2) have no effect on the progression of MS. So the third question comes up, would it be just as, or more, beneficial to treat the fatigue itself with antifatigue medications and let the suspected inflammation run its course, as would be done with other nontreated relapses.

So back into the gray area. It's possible to have a relapse due to lesions that don't show up on an MRI, but fatigue doesn't quite fit that category. Because your fatigue comes in episodes doesn't necessarily mean the episodes are relapses (inflammatory and demyelinating). And until you and your neurologist can establish just what the episodes are, you won't be able to come to an agreement about how to manage them. It sounds like it's time for a specific conversation about this with your neurologist.

[Myoak]

Hi bizzylizzy,

Just a couple thoughts...

Myelin not only protects nerves it also, very importantly, speeds transmission of impulses; in other words myelin is a key factor in how well the nerve functions.

When nerves get de-myelinated nerve impulses travel slowly, and a huge amount of energy is used because of that... your body is attempting to get that impulse going so you can walk, or whatever you are trying to do. Using such a huge amount of energy results in the incredible fatigue you are experiencing. I think that is the simplest explanation.

What to do? Talk to your doctor and discuss whether your treatment is effective enough to slow down demyelination, preventing or slowing demyelination gets at the root problem, the cause of fatigue.

I wonder if you have found a MS treatment effective enough, or are on one at all? Of course, there are no guarantees with them but I'm not going to beat around the bush... a demyelinated, exposed nerve will over time die. The damage then is irreversible.

Forgive me for being cold or blunt but I notice you are in your 30's. Sometimes people want to wait and hope for the best in MS; that's ok, it is a matter of personal choice. But please let me describe what someone with MS is waiting for...demyelination, nerve death, and disability. The unknown is at what rate of speed, or length of time to disability. It may be 30 years or more, it may be one year, depending on how aggressive MS is or suddenly becomes.

But make no mistake about what is going on. Talk with your doctor about it. And for heaven's sake find a MS specialist or clinic specializing in MS, won't you? You wouldn't take your car to a bicycle shop for repair so don't take your MS body to anyone but a specialist, that is my advice.

Do forgive me if I sound harsh and uncaring, I do care about you and want to provide information which may assist you in issues you face.

All my best thoughts are with you. I believe you will soon get through this hard place. Be sure to write down your notes and go over them with your doctor and form a plan together.

Best wishes!

[Marco]

Here's a different perspective.

Q. Is it possible that MRIs miss lesions?
A. Absolutely.

Unfortunately, too many people rely too heavily on MRIs and that is a definite mistake. MRIs frequently miss lesions because they are a point-in-time technology and not sophisticated enough to catch all lesion activity. That is why the phrase, "treat the patient and not the MRI" exists. Here's an article that you may find enlightening: http://www.msdiscovery.org/news/news...more-meets-eye


That doesn't mean you are (or are not) in a flare up. That's why it's incredibly important to have a neurologist that you trust and you can work with. Too many MS patients have neurologists that are dismissive of their symptoms, quality of life, or them as people. Please listen to Myoak's advice about finding a MS specialist.

[palmtree]

I think, just from experiencing my body, that whatever is causing my body to be susceptible to demyelination, is also causing fatigue. So fatigue is not a symptom of demyelination but part of the autoimmune condition.

Also, Marco's information about demyelination plaques not showing up on MRIs, coincides with my experience, too. I had an episode when I lost my ability to walk. The MRI said there were no new lesions. After 6 months I recovered some of the lost gait but it takes a lot more effort to walk than it did.

[Poppy7402]

I think, just from experiencing my body, that whatever is causing my body to be susceptible to demyelination, is also causing fatigue. So fatigue is not a symptom of demyelination but part of the autoimmune condition.

Also, Marco's information about demyelination plaques not showing up on MRIs, coincides with my experience, too. I had an episode when I lost my ability to walk. The MRI said there were no new lesions. After 6 months I recovered some of the lost gait but it takes a lot more effort to walk than it did.

I had the same experience in Sept 2014, lost the ability to walk but supposedly no new lesions. I'm now left with a permanent foot drop.

[Myoak]

MRI can and does miss some lesions.

MS is traditionally thought of as a white matter disease but gray matter lesions frequently occur in MS and they are much more difficult to see on MRI. They typically cannot be seen on the 1.5 tesla MRI most MSers get. To quote one study, “numerous cerebral cortical lesions not evident at 1.5T were seen at 8T…

Postmortem MS brain tissue studies show 4x more damage in gray matter (cerebral cortex) than in white matter:

“The percentage of demyelinated area was significantly higher in the cerebral cortex (mean 26.5%, median 14.1%) than in white matter (mean 6.5%, median 0%) (p = 0.001)… These results indicate that the cerebral cortex is likely to be a predilection site for MS lesions and identify general cortical subpial demyelination as a distinct pattern occurring in a significant subpopulation of MS patients.”
http://www.ncbi.nlm.nih.gov/pubmed/12901699

Last point – I believe the study, Fatigue as the main presenting symptom of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) provides evidence of fatigue as one symptom of demyelination. CIDP is a chronic form of Guillian-Barre Syndrome. It isn’t MS but it is a demyelinating disease and I think we can learn from studies of demyelination in various diseases. JMHO.

For me, the takeaway is that we want to slow demyelination as best as possible and it may be happening even when a 1.5 tesla MRI may not show it.

[BadAttitude]

THIS was the right thread to click on today! I have been very fortunate and almost textbook in how my MS has manifested itself over the years. I started out with only sensory symptoms of numbness and tingling, went on a couple DMDs, switching to one with more efficacy when first one stopped working, third when second became contraindicated, and fourth when third failed miserably. Third one being my own personal Waterloo and the reason this thread applies to my situation so perfectly.

I started having vicious relapses while on third med (Gilenya)...lost my balance and developed significant cognitive deficits (speech, memory, attention span problems, etc). My neuro had me discontinue the Gilenya when script ran out and one month later admitted me to Lemtrada treatment. There is no question I was having a relapse at that time: I had to use a walker just to stay upright to get into the hospital. Fortunately Lemtrada gets administered concurrently with some pretty heavy steroid dosages for five days, so that helped with the acute relapse symptoms and my trusty walker "Silver" is stabled in the garage for now. Lemtrada appears to be holding additional symptoms at bay for now, knock on wood.

Fast forward to this week: I had an MRI with and without contrast last week, and the report said no new lesions. I was like wut. After all that, I don't have battle scars? The symptoms were brand new, never seen before, severe. No new lesions?!?! I mean, that's good per the neuro's office, but what does this mean?

Per this thread (anecdotal evidence, surely) but with nothing else to reference, what conclusions can be drawn from the timing and nature of my last relapse?

a. I had new lesions causing the relapse but they've cleared up without a trace
b. I had lesions on grey matter that the MRI was not picking up
c. It was aliens

[tl-tr3]

I had similar experience

In May I lost my ability to walk suddenly & was hospitalized .
MRI showed no new lesions. My MS doctor refused to call it a relapse.
He said with no lesions it had to be inner ear -
The Physical Therapist said it was clearly MS -
The ear MD wasn't sure either way .
I still have problems walking i.e. falls - Most likely if it was inner ear it would have resolved by now,I think.

[Myoak]

Tl-tr3,

I am so sorry that this has happened to you. It reminds me of a situation many years back when my wife had something similar happen. I took her to our regular neurologist and he said the same thing as yours... not MS related in his opinion. The very next day we saw a MS specialist and he said it definitely is MS related and immediately began IV steroids which largely resolved the problem in 3 days.

Only then did we realize a MS specialist was absolutely necessary for the best chance of success. My God, I hate to think of what might have happened had we not gone to the specialist.

Please get another opinion from someone more qualified. We have to drive 2 and 1/2 hours to see a specialist and it is certainly worth the effort.

I realize not everyone can do that but, IMO, you are not getting adequate care. JMHO.

God bless you.

[SNOOPY]

Can you have an exacerbation (relapse, attack, flare-up) of MS without MRI evidence? The answer is yes.

I was in a severe exacerbation at the time of my diagnosis and the MRI was clear. I had an exacerbation last year and there was no new lesions.

[Temagami]

Not even a Tesla3 machine can catch all of the grey matter lesions. There is a research tool tension diffusion that is more sensitive, but... not a standard in image generation in the clinical side of MS. You know your body better than anyone. Whenever I´ve had new sx, a MRI has shown new lesions. Go with your gut - you know if something is new or different.

[timtam]

You are describing me

Hi,

Reading your story you are describing me !!! You are my stunt double living on the other side of the world. I can totally relate to everything you said and I have experienced the same overwhelming fatigue with no change on the MRI more than once now. I was always convinced it was a relapse but my neurologist thinks it is better explained as a symptom of my body needing a rest. He said that even though I have recovered most of the function from previous attacks that to perform normal daily tasks takes me more energy than someone else. I also have cognitive issues and these apparently cause a huge physical strain. As I am always pushing myself I eventually get to a point where my body becomes overwhelmed and needs a total break. Hence the fatigue kicks in. I asked if this means I should stop doing what I am doing. His answer was a BIG NO !!!! His advise was to continue pushing but to try to be mindful of stress (yeah right I have 2 teenage boys and a 6 year old boy who thinks he is 15 !) and how I deal with it.

I will be thinking of you tomorrow when I am pushing myself to take my 4 km daily walk in the forecast heat wave which is about to hit here.

Best wishes for an energy filled future !
Angela

[kmathis]

According to my doctor lesions take awhile to form will not always appear on an MRI, they can also heal. Fatigue is the #1 symptom of MS and can signify the onset of an exacerbation if you have "other" symptoms or old symptoms reappearing are worse or lasting longer. When I was diagnosed I was fatigued had issues walking and had cognitive problems. I exacerbated 2 years ago...fatigue & my eye twitched every 1/2 a second for 7 wks. My current exacerbation started in the spring with fatigue and a case of tennis elbow. If you are fatigued it could be a hundred things causing it. If it is an exacerbation some other symptom will manifest.

[Myoak]

Hi Angela,

Please re-visit the topic of pushing yourself with your neurologist, won't you?

You would not want to push yourself into an exacerbation by doing 4k in a hot environment if you totally exhaust yourself doing so.

It just seems like that is stressing your body inordinately and that may be counter-productive.

But those are just my thoughts, for what it's worth.