Here's a theory

[Thinkimjob]

Pseudo-exacerbations eventually just turn into 'progression'. No full blown flare, no treatment, nothing, suck it up, and one day the suckers just don't go away anymore.

Anyone else notice their pseudo stuff eventually turned into either a "real" flare, or just one fine day stayed for good?

I don't think enough attention is paid to so-called pseudo flares. Yep, sure it goes away in a day or two, but um, why is it happening in the first place?

Surely that's a sign of nerve damage. Maybe your poor old nervous system copes better earlier on.

I can't be having a pseudo flare three times a week.

If your leg went numb for 24 hours back in the day before you knew you had MS, you'd be thinking that was something pretty bloody serious.

And yes I understand about the whole new active lesions bit, but maybe MS progression isn't all about lesions.

[palmtree]

I've thought the same thing many times. There seems to be a disconnect between the MRI confirmed lesions of a flare and the relentless progression of our symptoms. I think they will learn more someday.

[KatieAgain]

Hey Think-

Yes...I have had a pseudo-flare turn into a real flare in the past. When I am in a pseudo-flare, I retreat into my bunker until it resolves.

My MS Specialist actually treated me for a pseudo-flare a couple weeks ago. He did not put me on IVSM, but did give me oral steroids to hold me over until my next TY infusion which is happening right now.

He explained the difference between the two and it does not really follow the textbook answers we put here on this site...so I am not going to repeat it.

But bottomline for me was symptoms that last for more than 24- hours and are bothersome should be treated...no matter what the MRI says. But I need to make sure I have no other underlying conditions. This is only my game plan for me and my doc. He is a keeper...best neuro I have.

So yes...I personally think there is some merit to your Theory. I too believe that flares continue the progression...but I know medical science is not on my side.

[sardi_g]

I may be repeating common knowledge but fwiw:

In addition to lesions, we're undergoing neurodegeneration at a faster rate than others. Not just axons, and not just neuron cells.

Old lesions become active again, new lesions form.

Our cognitive reserve has been trying to cope with all these insults but may eventually run out.

But does cognitive reserve cope with physical or just cognitive issues. Are there two types of cognitive reserve?

It's synergy of the ugliest type.

[sardi_g]

I think I meant neuroplasticity - one of which is cognitive reserve?

I don't know..

[Marco]

Is the Central Nervous System being attacked?

I'm sorry. My reading comprehension skills are certainly not what they once were, and I am having a hard time understanding your post.


The primary difference between a pseudo and a real exacerbation is whether the central nervous system (CNS) is under attack. A pseudo exacerbation is the increase of regular symptoms caused by a trigger, and not inflammation of the CNS. Once the trigger is removed, the symptoms of a pseudo exacerbation abate. Therefore, the best treatment for a pseudo exacerbation is to remove the stimulus. Common causes of a pseudo exacerbation include: heat, cold, fatigue, alcohol, infection, fever, etc, but is not caused by the autoimmune system attacking the central nervous system.

Years ago, doctors would submerge patients in a hot water bath to determine if they had MS. They were intentionally trying to cause a pseudo exacerbation looking for existing damage. Theoretically, a patient with more damage would have a greater reaction to the hot water trigger. If you submerge the patient every day, the patient could have a daily pseudo exacerbation. For a pseudo exacerbation to cause the onset of a real exacerbation; the immune system would have to be activated, and cause inflammation in the central nervous system.

The MRI technology currently employed is not capable of finding all lesions, whether active or inactive. That is why neurologists should treat the patient and not the MRI. The presences of detectable lesions are not required for disease progression to take place. The presences of detectable lesions are not required for a real exacerbation to take place. The majority of lesions are asymptomatic; where the patient is completely unaware of their presence. Unfortunately, a good number of lesions remain invisible to the MRI, or we would have a better correlation of symptoms to MRI results.

[palmtree]

Wow, Marco. That's amazing information. I never knew all that.

[Thinkimjob]

Hello, Marco. In my case I hear the "treat the patient" not the MRI/ disease/ illness quite a bit.

(I'll play nightmare ailment poker - burst brain aneurysm and MS, top that!)
Not been a red hot success thus far. Duelling banjos. Aneurysm bloke very concerned about the swelling "daughter aneurysm", MS woman very concerned about the MS.

My plaintive, well what is the point, met with fierce objection on both sides.

And the irony of it all is I'll probably die of cancer.

[TinaP303]

Thanks Marco - that's probably the easiest to understand explanation I've heard.

[Jennagain]

I never would have given your theory a second thought until last week when it happened to me. I had a really rough weak both physically and emotionally and of course my leg was much worse and my bladder started acting up. I thought this was a pseudo flare and I have had things flare from stress and fatigue before and they usually are gone within a day. Now it's been a week and things have not remitted so I am thinking this is an actual flare.

[Marco]

You should check with your doctor, if new or worsening MS symptoms last longer than 24 hours. The doctor should then follow a protocol to determine the proper treatment. If you have an infection, (for example: UTIs are commonly mistaken for a flare), it will be treated as an infection, and not a flare. If there is no other cause for the symptoms, your doctor may order a MRI, or simply treat the flare. Some people elect not to have their flares treated, and that is a personal choice. Even if you decide not to treat, it's advisable to let your neurologist know so they can make adjustments to existing therapies, order physical therapy or whatever. I wish you well ...

[Ikaika]

Wow guys, thank you for posting what I've been trying to articulate but ciukdnt make sense of.

It's like I've been in a flare or pseudo flare for over a year. I used to take IVSM and it helped but haven't taken it for about a year now due to the side effects. Saving doses for the dire episodes.

I've seen my dr numerous times and no active lesions but my syptoms have progressively gottem worse over the last year, not to mention the years prior.

I haven't been able to determine if this is just the natural progression of the disease, despite any ongoing treatment and healthy management...or if there's more to this bizarre story that shows the "no cure yet" rearing it's head.

This has been hard and reducing the stressors for the pseudo flares make sense, and I'm confused because that's what I do every day. Argh! And it just keeps on a downward slope with less good days slipping in.

Yes I've tried new meds, supplements, etc. and a very healthy diet etc, so this thread is helping me see what's trying to be figured out! Thank you!!

[marieprei303]

Trying to understand this whole thing...

So, I think my question relates a bit to this thread, but if not, please feel free to provide some direction to a better place. I have had MS less than a year. I really feel pretty darn fine most of the time. Tired, yes, but mostly normal. I had a few months where I dealt with what I would call my "annoyances". Trouble swallowing, numbness, tingling, you know. Are those what you are calling pseudo-exacerbations? Just everyday, drag you down but not really hurt you, annoyances. Then, they just went away. About a week ago, the trouble swallowing is back. I don't think I would call it a flare-up, but I don't know what it really is. Any thoughts? Just deal with it or see the doctor? Can we trigger these things, or do they just come and go randomly? Thanks, everyone!

[JerryD]

This discussion is really good and intriguing. I am of the mind that pseudo flares are way for neurologists to explain something that they can't explain. Your theory is as good as any. I think that a pseudo flare is your body's way of marking the digression. I have them, sometimes. I can't get any explanation from my neurologist. It's like a 'ghost', a 'phantom'. So comforting! lol

[Marco]

Marie - Over time, some of my symptoms (mostly numbness, spasticity) have gotten worse, but never recover. These few symptoms I attribute to progression. Otherwise, my symptoms increase any time I am overheated, stressed or overly fatigued. After a long day, it's not uncommon for my symptoms to be more obvious, but they recover after resting, cooling off or calming down.