Has anyone else not had relap in 7 yrs?

[TbCat]

In 2005 I had Opic Neuritis uhthoff's phenomenon, Hot makes my eyes go dim, cool they cleaned up. It took a year for that to go away and my eye sight to fully come back. In that same year I had jelly legs, itchy arms, and my nerve pain started. My pain has gotten worse, but I have not gotten any more relapes. And I have fully recovered from them all, except the pain, I am on pain killers for that. I do have fatigue and I do have brain fog, can't think how to spell anymore. But now my neuroligist is now thinking maybe it wasn't MS at all. I have large C7 lesion. So my question is, is there anyone out there that hasn't progessed? I have changed my diet, I have stayed at home to get sleep when I feel fatigue, maybe this has stopped the progession? I have done the liberation treatment too. If it is not MS what the hell is it?
Thank you for your comments
TbCat

[twopack]

Did your physician who doubts MS have any ideas?  I absolutely HATE it when they ponder us or make pronouncements like this as if "not MS" is some kind of actual diagnosis!

I had a little trouble following your story as well - but not too much.  I did wonder if you had brain lesions on MRI.  I thought NMO when I first read just ON and a large cervical lesion.  But considering seven years have passed with residual symptoms but no advancement I'd have to wonder about acute demyelinated encephalomyelitis (ADE) instead.  I really don't know much about it but you asked, "If not MS, what?" and that's the best I could dig out of my brain.

But I also know of people here (and in the 'real world') who have gone many years between recognized flares and even more who fail to show visible lesion progression on MRI.  It may be that MRI science for MS isn't quite as clear as docs had hoped it would be or believe it is.

You could always choose to believe this is good news for TbCat.  Maybe the diet and exercise are perfect for you.  Many people are left with residual losses after a flare with increasing amounts of functional loss after each and every flare.  Really, few people are lucky enough to recover fully from flares after being unlucky enough to get MS.

I'm actually most concerned about your pain.  Narcotic pain relievers are well known to be ineffective against the type of pain MS causes.  In fact, they cause new problems when tolerance and pain sensitivity develop shortly after people start taking them.  Doses are then usually increased when pain escalates and becomes more constant - reinforcing a downward spiral that never provides relief.

PLEASE ask your doctor for referral to a pain specialist who will help you find a better solution to your pain than the narcotics it sounds like you are taking.  Other types of drugs and modalities (usually multiple picks in a variety of combinations) are likely to bring you better and more consistent relief.  I've been there myself.  It was scary to start but so well worth it in the end.

[supermum_ms]

Hi and welcome to our MS community, i dont know if you've ever read our health pages, if you haven't yet, you'll find them just to the right of your screen. I'm sure you'll find them quite informative and well worth reading.

I'm not entirely sure of your meaning, it looks like your saying you haven't experienced another episode of Optic neuritis (ON) since the first time in 05, i get that bit but i'm not sure if you are also saying that since you recovered (05-06), getting over heated or hot hasn't effected your sight ever again.(?)

If getting over heated or hot doesn't effect your vision anymore, does it still effect you in other ways, maybe physically eg increased fatigue or weakness or cognitively eg increased mental confusion/word recall etc?

In MS an increase of temperature either external or internally, typically brings back or worsens sx's until you cool down, its called a peudo relapse and not counted as a true relapse. They use to test for MS by putting the patient in a hot bath, if their sx's returned or got worse it was MS, lol the tests may have evolved but heat still effects pwMS the same. So i'd expect even with out any further relapses heat would still be effecting you in some way.

To be honest, i'm not entirely convinced you haven't progressed even without an 'obvious' relapse, a relapse doesnt need to be as startling as the first. We recently had clarrification on what a relapse is from a well respected MS specialist, who says a relapse is the return or worsening of 'ANY' sx's that lasts 24 hours or more, it doesn't need to be 'all' your sx.

There are other possibilities other than misdiagnosis 1) you dont have the relapse type but one of the others eg PPMS. You seem to have added fatigue, cognitive issues and your pain has increased. I suppose its possible that these are pain and or medication side affects but couldn't that just as easily be signs of progression and or relapses? 2) You just haven't had a relapse in years, even that doesn't necessarily mean you dont have MS, it happens and its probably every MSers hope.

You mention the C7 spinal lesion, and i'm assuming you have at least some evidence of brain lesions, ON is one piece of evidence but do you have a positive LP, any visible MRI lesions and or other test results indicating brain changes eg cognitive testing etc? Objective test results  can make a huge difference in what else it could or couldn't be, if your dx is really in question i'm wondering if this is due to no further visible lesions showing up on repeat MRI's or from not having an obvious relapse.
  
"According to the Mcdonald Criteria 2010 - 2 attacks; objective clinical evidence of 1 lesion - 1+ T2 lesion in at least 2 of the 4 typical MS regions of the CNS (periventricular, juxtacortical, infratentorial or spinal cord); or await a further clinical attack implication a different CNS site"  

http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/full

Periventricular covers the optic areas so your ON indicates a lesion there and then your spinal lesion give you 2 of the 4 and i suspect you probably have other lesions by now. I think you originally had enough to dx CDMD but id think many neuro's would be questioning, if you have no other MRI lesions or clinical evidence of, since 05.

lol i'll stop because i'm starting to wonder if i'm actually helping or just being more confusing, sorry if i have been, i think there might be too many missing peices for my brain tonight, again sorry!

Cheers...........JJ

PS there isn't actually any science to back up that sleep, diet or the liberation proceedure possitively or negatively alters the progression of MS, there is only anacdotal evidence at this stage.