This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Guys

Quick pick of the brains & experience here, if that is ok?
Background: MS diagnosed in 1999 - mild relapses periodically up until 2006.

Had bad relapse in nov 2006 & I had an MRI of brain and spine in Dec 2006 - result:

one non-enhancing lesion in c-spine at c2;
Three non-enhancing lesions in brain, one glad-enhancing lesion in brain;
Two glad-enhancing lesions in c-spine at c3-c4 (inflammation here caused bulging of spinal cord it was so bad) and c5-c6 - had course of IV steroids. Another (nasty) relapse late Jan 2007, so started Avonex in Feb. and had more IV steroids. Another relapse April - more IV steroids.
Had another MRI June 2007 to check effectiveness of Avonex - all previous lesions were still visible but not enhancing, except the nasty one at c3-c4, it was still enhancing, though the cord was no longer bulging.

I have had no further relapses, but had an exacerbation early this new year. My symptoms of numbness, weakness, L'Hermittes, spasms, pain, fatigue, poor balance and co-ordination, poor fine motor skills, mental fuzziness etc are all still there - they have not resolved and it is now over a year since they first appeared...

Question - how long does inflammation typically take to go away? Surely a lesion should not still be enhancing from December until June?
I think it might still light up the film even now as my L'Hermittes is hideous (though I suppose that could just be due to permanent damage now)!
I still have a lot of fatigue, yet my neuro, based on the June MRI which showed only one still enhancing lesion, says that I don't have enough 'active' disease to account for my fatigue and slight mental fuzziness, and that ms doesn't cause pain (I know I have mentioned this part before!).

But I am really curious to know if others have had lesions that have been inflammed for that long a period of time - over 6 months? Do any of you think the length of time it was present could account for the fact that I haven't recovered from those relapses and still have deficits, whereas previously I usually recovered functonality within a few weeks or a couple of months?

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Hey Bob

Thanks for the response - I saw the posts by 777 and I have been reading them with interest. In fact, you could say that they prompted me to ask this almost 'opposite' question - my neuro thinks I still have symptoms either because I am depressed (!), hysterical, or possibly becomming SP - (btw, he now denies saying that ms doesn''t cause pain), I think he is confused because I don't have a huge amount of lesions, so he feels that, clinically, I should be better than I am, and he doesn't factor in how 'active' my lesions are, or where they are - the 3 in my c-spine cover most of the right side of the spinal cord in my neck (with gaps in between), so even if they resolve or heal to plaques or non-enhancing T2 weighted lesions (which some have), they still leave behind damage which prevents correct neuro-transmission - ditto my few brain lesions! Neuro does not get this at all - he is probably used to dealing with patients with even worse diseases, so feels I should think my self lucky I can walk (a bit), I think he only has 3 or 4 patients with ms.

I am a bit frustrated because I have asked him some questions (to which I knew the options or answers and was really just looking for an opinion), and he either told me the question was rubbish (supplements are useless), or deny things that I know to be true (the pain and ms issue). I am going to say something that no-one here will believe and you will all scream at me to get a new doc when you read, but keep in mind I don't have much choice: When he saw my mri in June - showing the rest of my lesions to now be non-enhancing t2 weighted lesions - still visible on film (I think our MRI scanner is a 2-tesler), and the biggie on my c-spine still enhancing, although not 'bulging' as it had been in Dec (does this mean my relapse is over?), he told me and my husband that I was back to normal and that ms wouldn't be bothering me ever again, so hubby asks- "do you mean she is cured?" in a highly sceptical (sarcastic) tone (he is an attorney), to which my neuro (bless his heart) answered "basically, yes"! My husband has refused to accompany me on any further consults for fear of ending up being arressted for punching my doctor....

By "relapse" you were referring to revisitation of past symptoms and using exacerbation you were referring to new symptoms?

Just the opposite (my understanding of the terms stands to be corrected, for sure, so I have probably got it the wrong way 'round!) - to me an exacerbation is a worsening of existing symptoms, whereas a relapse is the emergence of new symptoms not previously (or currently) experienced. I had a whole host of issues after a nasty relapse last year (early 2007) then in early 2008, my already weak rt leg got much weaker (quite suddenly), my ms hug, which had almost gone, came back pretty bad, numb/burning rt arm and hand started spasming frequently into a twisted claw, L'Hermittes got so bad I had to wear a soft neck collar/brace for a few weeks (always have L'Hermittes), major fatigue early each day blah, blah - all things I had already experienced and still had (to some extent) a year after they first appeared.
No new symptoms (until a few weeks ago when I 'maybe' had mild ON - neuro decided not, but Opthalmologist thought I had a mild attack, but just gave me oral steroids as I had already had it for a few weeks when I saw him and it was resolved as far as I was concerned, I have never had ON before).

But really, my query was - is it usual for a lesion to still enhance i.e. be 'active' and inflammation present on a low-sensitivity MRI from (at least) Dec to June - proven on MRI? Just one lesion, that active, for so long - not a new lesion, same one?
I think I read somewhere that a relapse lasts from 24 hrs to 4 weeks - my understanding of that was that although it might take much longer (and maybe never) for symptoms to disappear, the actual inflammation in the lesion(s) lasted up to a month... Taking into consideration that I had 3 seperate courses of IV steroids (1gram per day for 5 days) during these 6 months, (and that I had started Avonex in the Feb) - I was just curious if that was odd because I couldn't find anything about how long a single lesion was usually active for.
Basically - did my relapse last from Nov when symptoms started (mri in Dec) until at least June when lesion responsible for relapse was still enhancing....until when? I still have all the same symptoms, so have I had a 6 month relapse (as per MRI) or a one year relapse, or is it all just junk and is it best to largely ignore mainstream medicine (except for medications - DOM's) 'coz they haven't a clue either and just feed us rubbish?
I am starting to feel a bit peeved - I was told I was cured dammit, I was robbed! Bob, I expect you and Dom to stand with me on this...Na, just kidding, but hopefully there will be a cure in our lifetimes! Isn't it cheeky of him to say that though? What if I was some dumb schmuck who would have believed him, and then thought she was going insane...

So, how long does inflammation in one lesion last?
Please, anyone?

Thanks - apologies for long rambling posts - brevity is immpossible for me - I just don't know when to stop!

Suggestion # 1: Fire your neuro. He is an idiot.

Suggestion # 2: Live your life the best that you can now and stay as positive
as possible. Your husband and kids will thank you.

Suggestion # 3: Remember that very little is really known about this disease
and it does you no good to sit around and worry about
things that can't be changed or helped right now.

Suggestion # 4: Keep reading thisisms.com, for surely when a decent
treatment or (GASP) a cure is found it will appear here
long before it appears on the mainstream news.

gwa

Good idea Gwa - but I would be left with an even bigger idiot (the only other neuro in town) and I need a specialist neuro for my avonex script to be paid by insurance.
I would love to not have to see him any more - this man has had me in tears many times maybe that's why he thinks I am depressed? (when he told me I was cured, I argued with him, and he told me that he was the expert, not to question him and gave me a book on depression, which he suggested was now my only problem) - I was so emotional and distressed that I had a fight with hubby as he tried to push me into firing him too
I know I use this place to vent a lot about him, but it is soo heartening to know that it is him who is the idiot, not me (not to say I can't be an idiot too, of course). I also am able to ask questions here that he will not or cannot answer, which makes me less reliant on him for understanding this disease...

Love your response Gwa - you are the best!

Thanks - warned you I could not be brief - thank heavens for voice recognition software!

GWA has the PERFECT suggestions!!!!!

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Gwa - you are awesome - when I read your post last night - it wasn't all there as it is now, so I missed some of your wisdom! I will keep reading this site because all the folks here really seem to keep their fingers on the pulse of ms developments, and also because I get so much support as well as information - something a bit lacking from my doc...I suppose he does the best he can, but after joining this site, it just isn't good enough! I did realize that he was talking crap about my ms disappearing, but I was so gob-smacked that I didn't call him on it - I walked out in a daze that any professional could say such a thing - although, to give the devil his due, he probably felt he was trying to help me by getting me to "be positive"! He is my cross to bear
I really do try to live for now - I have a very full life and I am a happy person by nature (bad vibes, even from myself, make me uncomfortable) - I was really just curious about inflammation, the role of iv steroids, and the relationship with symptoms etc - especially after 777's posts and the discussions on Devics etc - just got me wondering (not that I think I have Devics, but because of the 'transverse myelitis').

Anyway - thank you.

Bob - you are also way cool - I have already accepted that some degree of inflammation and damage is ongoing with ms, and it is really obvious that the sensitivity of the scanner would be related to what can be viewed on the films - so I am with you on those points. As mentioned, I couldn't find anything on how long a specific lesion would enhance for - many people here speak about lesions no longer enhancing on new mri's, although I am not sure of the interval of these scans - I know the folks on clinical trials often have frequent scans, and I just thouht that someone would know more about that - this is the font of all ms wisdom as far as I am concerned, so just thought I would ask, in my usual round-about way...

The way our currency is going, your 30% won't be worth much when it is converted to $'s - just curious (and I know I shouldn't even ask), but what will you see is coming to Dom? Does he know about this?

Take care guys.

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Hi Bob

That was a really interesting article, and it is good to know that they may soon have better techniques for visualizing ms pathology, and with follwo-up over time, may even have an idea of how the disease actually progresses. Costs currently seem prohibitive, and I am sure you will have access to this in the States long before we will, so I will watch this with interest.

One thing though, it seems according to the article that the average time that a lesion enhances is 4 - 6 weeks, and will no longer show active inflammation after about 2 months (other changes in that lesion will be apparent at this time depending on whether or not it has remylinated etc) - so why the hell did my lesion enhance for over 6 months? Why was my neuro not curious about this? It probably doesn't mean a thing, but I like to fit firmly into the 'averages' when it comes to ms - don't like being an oddball!

Thanks once again for your superior research methods and for sharing the fruits of your labour

Best to your wife & the Tovaxin trial.

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Hey Bob

Mmmm - see your points, there are some variables involved, for sure, that we cannot be certain of. I hate to belabour this and I know you must be bored with this by now...
However, my mri's were done on the same machine with the same radiologist reporting them both - one done in Dec 2006 and the second in June 2007 (symptoms from this significant relapse began in Nov 2006 and new ones popped up in Feb 2007 - new relapse - and are ongoing at this point - no recovery of function or sensation). I started Avonex in Feb 2007 during the second bad relapse.
I had no new lesions on the June mri as compared to the Dec one, so it is really possible that the relapse in Feb was a re-visit of the same lesion that caused the relapse in Nov, but even if that is correct, Feb to June is still a long time.
Also, the relapse in Feb had different symptoms to the one in Nov - even including some left-sided problems that I have never experienced before, and had no lesion 'visible' in June on mri to account for (but I take your point regardng 'invisible' inflammation).The lesion that enhanced in Dec and again in June is at C3-C4 in the cervical spine, and the inflammation was reduced in June compared to Dec - it enhanced less and there was no bulging of the spinal cord, which was present in Dec and caused by the excess fluid or water from the inflammation, so it had 'healed' a bit, but it still enhanced!

I think I have flogged this horse to death now and I really appreciate your interest and input - it has been invaluable to me and just reinforces the fact that this site is just full of informed, questing, and caring minds...I will, of course, welcome any further comments or discussion - you are so helpful, but please don't feel obliged, I know that time is precious

Thanks, Bobster!

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Hiya Bob

Thanks again for your time...

Yes, I have seen both a neurosurgeon and a chiropracter, also my oncologist looked at my mri's just in case my cancer had recently returned in an unexpected place!
The neurosurgeon (saw him in April 2007, referred by neurologist just in case there was a surgical issue underlying my lesions) says I don't have any surgical issues - no trapped nerves or prolapsed discs etc - the chiropracter (I think) made my neck worse! I have also previously had mri's and ct's of the lumber spine and abdomen and all is clear. Besides, I have upper limb (rt arm/hand) problems, so cervical spine fits.
The neurologist, neurosurgeon, oncologist and radiologist all agree that my lesions in both c-spine and brain are typical of de-myleinating disease and I was diagnosed with ms because of this, plus CSF positive for oligoclonic bands and raised Igg, and clinical picture - neuro exam, symptoms, relapses etc. My neuro originally (in 1999) hoped I had ADEM, but this was disproved over time (and LP). My original mri showed half a dozen spots in my brain (some enhancing, some not) with 1 enhancing lesion at c2-c3 in the c-spine. I had no more scans until Dec 2006 as my relapses were mild, I recovered well and I was on no treatment (edss 0 - 3, depending on relapse/remission). My Onco thinks this may have been aided by my chemo and it's immuno-suppressive properties?

After my bad relapses in Nov 2006 and Feb 2007 my edss shot up to 5 or 5.5, and has subsequently subsided to about 4.5 (recovery has taken over a year and don't think it will get any better now).
My mri had not changed all that much from 1999 to Dec 2006, except my old lesions were no longer enhancing, and I had a new brain lesion that was enhancing, and this nasty c-spine lesion at c3-4 that has seemed to enhance for a long time (don't know if any other lesions had come and gone in between - only one new-unenhancing brain lesion and a tiny spot close to c2, near the old lesion showed in Dec).

The brain lesion enhancment had subsided by June, but not the c-spine...Maybe it has been re-inflammed instead of being constantly inflamed, except none of my symptoms improved between scans.
My neuro did offer to inject some steroids directly into my c-spine under ct guidance to see if that helped, but I didn't feel like being a guinea pig - don't think it has been done for ms - and I felt creeped out by the thought of a needle anywhere near this lesion as I could feel it so clearly

I am up very late tonight - I have injected with Avonex earlier and I can't sleep because of muscle spasms, chills, shakes, and pain! Totally drugged out, but can't sleep...

Thanks again for being willing to talk this out with me - I don't like being an odd-ball - in ms terms, I want to be average...

Short answer, I am confident that I have no other spinal cord pathology apart from ms lesions.
I just don't know - I am really an odd-ball! But surely, others must have had similar experiences? I can't bethe only person on the planet...

Hello. I see that these posts are8 years old. But I have the same question and am wondering if you ever got an answer? Or did something develop from the lesion that was still enhancing 6 months later? I have the same situation and my neuro says "curious". He tried to contact the radiologist who reads the MRI's but did not reach him. He just said to me "don't worry about it". So, of course, I am worried. or at least curious. Are you still on this site? And, if so - I hope all is well with you and I look forward to any insites~ patty