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.