'Permanent Arrest' May be Temporary

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'Permanent Arrest' May be Temporary

Postby Lyon » Fri Feb 16, 2007 7:01 pm

I didn't know there was such a thing as "Permenant Arrest" but this seems to shoot that theory.
Bob

http://www.medpagetoday.com/Neurology/M ... is/tb/5076
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Postby Manchester » Sat Feb 17, 2007 5:37 am

Hi Bob,

You can read different spins on this all the time, for example the Mayo have also conducted studies with similar information but a different conclusion.

Ultimately I would pay attention to the statement
"The authors noted that while there is clearly a subgroup of patients with MS who have a mild or benign disease course over the long haul, there is a lack of consensus on the definition of benign, and there may be other, undetected consequences of living with the condition."

I don't think there is any such thing as Benign MS, just a much slower progression which results in less detectable changes. I have an EDSS score of 0 after a lot more than 20 years but does this mean the MS has not progressed? NOPE.

The EDSS is much more a measure of physical disability and big cognitive changes not the small nuances that I have had. For a long time I have been aware of grey matter changes that take place all the time with MS and I think for me 'benign MS' is more luck so far than anything else.

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Re: 'Permanent Arrest' May be Temporary

Postby HarryZ » Sat Feb 17, 2007 8:15 am

Bob,

This study as well as what was mentioned by Manchester, sort of outlines the state of MS after decades of research. Varied opinions, different conclusions and no real consensus!! In the middle are the MS patients who can't be told what causes the disease and thus no effective treatments to date.

You would think that sometime soon, somebody, somewhere could come up with something that would unlock the mystery. Then again, I've been hearing similar comments for 40 years...sigh!

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Postby CureOrBust » Sat Feb 17, 2007 3:35 pm

Manchester wrote:I have an EDSS score of 0 after a lot more than 20 years but does this mean the MS has not progressed? NOPE.

... not the small nuances that I have had. For a long time I have been aware of grey matter changes that take place ...

I am really interested (and slightly jealous...) in what symptoms you do have? Do you have relapses followed by remissions that almost completely resolve the loses? I guess the reason I ask is that if I didnt have the clear relapses I got, I probably never would of seen a doctor let alone of ended up with a diagnosis. I mean, over 20 years, I would of just attributed it to getting old.
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Postby Lyon » Sat Feb 17, 2007 3:48 pm

Manchester wrote:I don't think there is any such thing as Benign MS, just a much slower progression which results in less detectable changes. I have an EDSS score of 0 after a lot more than 20 years but does this mean the MS has not progressed? NOPE.
Hi Manchester,
I have to agree with you and expand.

Although it seems to be widely accepted, I've always felt an incorrect outlook involves associating "having" MS as dependant on a diagnosis of MS.

As far as I'm aware there are only two things in life which you either are or aren't. Pregnancy and death. Everything else involves progressive shades of gray.

Likely someone has MS long before they are diagnosed. Obviously diagnosis depends on symptoms leading someone to seek a diagnosis.

At the lighter end of the MS grayscale there are people who will go through life without knowing because they won't experience problems which would lead to diagnosis.

At the extreme dark end of the grayscale there probably are and have been people whose deaths were attributed to "natural causes" before they ever diagnosed with MS because their early attacks were so severe. As a sidenote for those with doubts, the autopsy rates in the US were 9% and dropping when records were last taken in 1994.

Harry,
You would think that sometime soon, somebody, somewhere could come up with something that would unlock the mystery. Then again, I've been hearing similar comments for 40 years...sigh!
I agree. Getting out of this long term stalemate hinges on identifying something specific to the MS process.

Bob
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Postby Manchester » Sun Feb 18, 2007 4:32 am

CureOrBust wrote:I am really interested (and slightly jealous...) in what symptoms you do have? Do you have relapses followed by remissions that almost completely resolve the loses? I guess the reason I ask is that if I didnt have the clear relapses I got, I probably never would of seen a doctor let alone of ended up with a diagnosis. I mean, over 20 years, I would of just attributed it to getting old.


I feel a bit guilty even talking about this as MS for me- so far -is really a big 'nothing' compared to what most people go through, but maybe it will help illustrate this whole benign/not benign debate.

I got a diagnosis of 'possible MS' I was 17 (though they then tracked it back to 15), it was purely sensory creepy -crawly skin sensations and tiredness. My family went through a private doc as the NHS was reluctant to put it down to anything but exam stress. It seemed to resolve completely in a week or so.

Next when I was in my early 20s and had very painful neuritis, this confirmed diagnosis- though Evoked Potentials normal (even eye one), neuro -examination, apart from eyes, normal. Eyes normal within a month and no lasting damage. MRI showed old lesions and a black hole plus bright lesion on optic nerve.

If it wasn't for these two attacks I probably wouldn't have ever got a diagnosis, if it wasn't for the second attack I would still be 'possible MS'.

Since then it gets a little weird. According to the criteria for having a relapse I have never had another. This is because I have never had a sympton that has remained in-situ for over 24 hours. So on that definition I have never had another relapse and I am now in my mid 40s.

So what do I have. Over the intervening years I have had sporadic and isolated days when I have had tingling, skin sensations such as creepy crawlies on skin, what seems like TM for intermittent periods during the day, eyes sometimes hurting, painful patches of skin, feel more tired than normal, sometimes a painful leg or stiffish calf muscles but it all resolves completely by getting a good night's sleep. And the next day I am bouncing around as normal.

On other occasions I will be a bit more tired than normal for a day then fine the next day then tired again on the third day, back to normal on the fourth day. May be a stiffer than normal calf muscle on and off over day one, then nothing day 2 then back again on and off a day later but never remaining for more than an hour at any time. Never in-situ for a full 24 hours. Same with the tingling or creepy crawly sensations- it will last a couple of seconds, sometimes a minute then disappear and maybe come back for another minute later the next day or even a day later with nothing the day before then go again and not happen again for a couple of years. Repeating the same pattern.

None of it qualifies as a 'relapse' within the definition. Pseudo- relapse is the most my neurologist will grudgingly give and I gave up a long time ago even bothering to mention it.

But the first two and only two diagnosed relapses don't acount for all symptoms (skin sensations yes, TM no, stiff calf muscles no) and to have a 'pseudo- relapse' you need to have unresolved symptoms from previous attacks. This says to me the process is still on-going -though not serious enough to be on the radar as an MS relapse.

Perhaps this is what people who are never diagnosed with MS get, the odd day with odd symptoms that can be discounted. I know I would discount them if it wasn't for the first two.

Now, cognitively, I can't claim to be effected to any great degree, when I have my odd days of symptoms then I also feel less 'smart' and it definitely takes a bit longer to process information or remember things. Again never enough to have any effect on an examination but it out of the normal for me. I never bother to report it as by the time I would get an appointment I will be back to normal and feel like a fraud!

Interestingly I was involved in an experiment about 8 years ago to see if there were any difference in my blood serum levels compared to others with RRMS. Only difference was my serum uric acid levels were in the medium normal range and since then I have also used inosine and brewers yeast to get them even higher.

MS still has some effect on a psychological level. I can't forget it. As more pragmatic neurologists say ' it's only benign until the next attack'.

I think there is probably more than one type of so called benign ms, for some it may truly be benign- only in that it never reaches the critical level where it ever becomes apparent (exluding autopsy) and with others it is more a matter of just much slower progression and luck as to where the lesions lie. I think I am in the latter group.


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Postby Muu » Mon Feb 19, 2007 12:45 pm

Hi Manchester,
the course of your ms sounds very much like my own. I became official with spms at 40 after developing classic foot drop but have probably had it 22 years since my first episode of optic neuritis. Most of that time symptoms, like you i can't call them attacks or episodes like some have described, have been v mild. Hence the delay in a dx. There were signs, some classic symtoms, strong suspicions and telling test results along the way but it took the foot drop to clinch it. I don't think i can take any credit for (altho am truly grateful) for the slow path my ms has taken. I try to look after myself now and am disciplined with diet, rest, supplements and try (but often fail miserably) to exercise regularly. All these things do make me feel a lot better but perhaps they'd do the same for a non mser too. The black ms cloud still floats around. I try to ignore it and just go out there to LIVE & ENJOY my life.
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Postby Lyon » Mon Feb 19, 2007 2:37 pm

Your situations sound similar to my wife's Manchester and Muu.

Considering that there are people in wheelchairs out there it seems kind of whiny to only have that dark cloud to complain about, but just a year ago we (my wife and I) had a normal life to look forward to and that alone takes some serious getting used to.

I think the facts point to and I have the greatest hopes that good things are on the near horizon for MS sufferers.

Bob
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