Where do the symptoms hit?

[Mummy76]

Hi.  I am diagnosed with MS, was diagnosed about 9 months ago but have a question.

I initially had Optic Neuritis with numbness on the top of my left foot, pain in my left calf and twitching.   Those symptoms along with a MRI showing a small lesion led to my diagnosis.

My question is this.  After being diagnosed I worried about every little thing and often the numbness in my foot would hit and stay for a while and go again, same with the pain and bluriness in my right eye.  My neurologist said that this wasn't a relapse because with all the different nerves in our bodies it would be unlikely that I would keep getting hit in the same areas.  Has anyone else heard this?  She felt it was likely, specifically with my eye, that the nerves were damaged and the pain/blurriness was just a result of that.  

[Mummy76]

Thank you to everyone for your responses!

PastorDan, my ON was diagnosed based on my symptoms and the fact that the Optic nerve was pale.  I've had the VEP but am unsure of the results.  I also had the test to check my peripheral vision, I know the results for that were normal.  Sorry I can't be more help.

[PastorDan]

Well, I wish I could take all of this info with me to the neuro's offcie, whenever I end up going, with it all highlighted and cross-referenced and indexed.  It sounds like my experience, frankly.  I never seem to ask the right questions when I'm there.

Mummy, how did they dx your ON?  Did you have a VEP?  Was it through fundoscopy?  Just wondering; whatever's wrong with my eyes has yet to be named by the assorted docs I've seen.

Peace & blessings to all.

[SarahL2491]

Listen to Mary, she has a way of putting medical jargon in terms that most of us can understand!  I'm ready for her to write a self help journal in paperback for most of us!  

Breathe, in and out, you just have good ole MS and its collection of weirdness

[twopack]

I think this is more difficult to understand than the doctors or we want to admit.  Here are a few 'facts' to consider.

It doesn't matter how many nerves are in your body.  MS damage happens in the CNS (brain, spinal cord, optic nerves, cranial nerves) NOT in the peripheral nerves.  In other words the tingling probably isn't even actually about anything in your foot.  It is in the way the signal travels (or doesn't) to and from the brain and how it is interpreted along the way.

Your body works to repair demyelinated areas within the CNS.  It does a pretty good job sometimes and your symptoms get better - maybe even seem to go away entirely.  Then....
the weather heats up or
you try to fit too much activity into a day or
you get run down or
menses has your hormone levels askew or
maybe there isn't anything you're even aware of AND
BAM!  
Signals falter and symptoms reappear for various lengths of time.
The repair job can't handle the load because as good as it is it can never equal the perfection of the original (unbroken) connection that handled almost any variety that came along.

It is certainly possible to have repeat episodes of ON.  It is also quite common for ON to take many, many months to stabilize at what will become the final 'new norm'.  Until it does I'm thinking it will be at least as susceptible as other body parts to symptom flux.  And remember, (unfortunately) it will likely never be quite as good as it was before.  Maybe that is what your doctor was trying to remind you of.

When a previously existing symptom occurs with increased and lasting intensity or extends to a new area your doc may decide you are indeed having a true flare - an exacerbation - an extension of damage - or a new episode of ON.  This does not mean it is worse now than it was yesterday or last week.  This would be a new all-time record for intensity or area of involvement.

Flares that are treated as such but appear to be near identical repeats of past flares usually have long stretches of symptom free or near symptom free time between them (think months to years).

There is also something called paroxysmal symptoms that can occur with MS.  Symptoms in this group are usually very brief in duration but can come and go in bursts over the course of several hours or days.  They are associated with mechanisms of nerve conduction called ectopic and ephaptic transmission.  (There are HealthPage topics on this as well as more in-depth information about the different types of exacerbations.  The index of HealthPages can be found at http://www.medhelp.org/health_pages/list?cid=36)

I hope something in all this helps.  As usual I got very carried away so hope I didn’t just end up adding to the confusion or end up boring you to death before you got this far down the page.

As I started out saying, this is a hard thing to understand (and I’m sure I don’t have some of it quite right yet either).  Keep asking questions here and of your doctor and TRAC your individual symptoms so you will learn how and when your body is apt to act in different situations.  In the end it may be the only way to learn when it’s safe to handle symptoms on your own and when it’s best to call in the professionals.

[supermum_ms]

Ok both those situations (menstral/hormonal flutuation and infection) are going to be pseudo relapses, not true relapses because when they are gone so are your sx's or at the least back to your new normal. Many women seem to experience this with their cycle, we've discussed it on here a lot, and infections are another common cause of pseudo's. Warning, if an infection is bad enough it can bring on a true relapse, so deal with any infections you get promptly!

Basically anything that causes your internal temp to rise, can bring on your sx's and makes it a 'psuedo' and not a true relapse, eg infection, menstral, exercising, manual labour, weather, over doing it, bath/shower etc etc

You probably havent had as many as your thinking because there would be some changes in your MRI or neuro exam, if you were relapsing a lot. And yes, i know i'm saying that even though MRI's dont pick up everything, but 'something' would shown up some where, in that time frame if you had been. Finding your balance, in the begining is probably the hardest thing to work out, it will take time for you understand your body and know when to rest and how much you can do but it will come! :o)

cheers.........JJ

[Mummy76]

Thanks JJ.

I had hoped my neurologist was right.  Otherwise I have quite a few "minor" relapses.  Otherwise I had myself convinced I've only had 2 relapses since the MS idea first came up.  Although I do notice that around my period symptoms flare up and right now I have the flu and all my sx have reared their ugly heads.

[supermum_ms]

I so dont get what your neuro is talking about, ON that has resolved but then returns is a classic relapse sign!

I dont think its a matter of semantics, to me its chalk and cheese, correct vs incorrect information and it's not correct that a person with RRMS is not having a relapse UNLESS they are experiencing a NEW sx.

It's not correct that sx's that remitted and then return again is NOT a relapse, that IS the very definition of Relapsing Remitting.

It's not correct to say "with all the different nerves in our bodies it would be unlikely that I would keep getting hit in the same areas." that IS exactly what happens with demyelinating lesions and exactly what happens to people who have MS.  

LOL maybe the question should be....How did this neuro ever pass her final exam?! ;o)

Your friends sx's, if they dont ever go away then it isn't a relapse, its either psuedo (false) or the sx's have become his/her new normal, which is basically what normally happens in MS. For him/her to be having a true relapse, those same sx's would need to 'worsen' or and he/she does experience a 'new' sx.

Personally, i dont count or even think i'm in another relapse until things keep getting worse for up to a week, the 24 hours isn't long enough anymore for me to even register i'm slipping again. I did use to think a relapse needed to be 'all' your remitted sx's returned, as well as 'all' the every day ones worsening and or experiencing something new. but...

The relapse question was put to a big wig MS specialist earlier this year and lol reality check, its not 'all' your sx's playing up on you at once, its suppose to be 'any' of them, which was a total bummer for me, and harder to get that info into this pea brain lol so didn't want that to be right.

Honestly understanding when your in a relapse is really really hard, but it does get easier over time, and it helps if you understand whats normal for you and whats not.

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

[kwarendorf]

I have symptoms that are with me everyday. I have tinnitus 24/7 and every morning for the first 5 minutes I have double vision (nystagmus). I also have bladder issues and neuropathic foot pain. These things are part of my everyday life.

For me a relapse would be a new symptom or the worsening of an existing symptom. I have Secondary Progressive MS so I'm not sure I will have definable relapses.

In the end it seems to be largely about semantics. The real questions are how do you feel and what are you doing to improve how you feel.

Just one man's opinion :-)

Kyle

[Mummy76]

But what about people who's symptoms don't go away once it hits?  I have a friend who's main symptom was tingling and that still comes and goes randomly but her neurologist doesn't consider it a relapse?

[kwarendorf]

Symptoms can come and go. Sometimes the symptoms are the same, sometimes they aren't.

The time frame that JJ outlined is what helps differentiate between one relapse and the next. If any symptom, old or new, is around for more than a day, and you have been symptom free for at least 30 days, then it's a new relapse. Otherwise it's a continuation of the current relapse.

Kyle

[Mummy76]

Hmmm... that's not an exact quote but it is what she said.  She defined the ON and the rest as a one-off until I had a new symptom.  The return of earlier symptoms didn't count as a relapse.

[supermum_ms]

Ok lol i'm a little confused by what you've written "My neurologist said that this wasn't a relapse because with all the different nerves in our bodies it would be unlikely that I would keep getting hit in the same areas."  so i've just got to ask, is that an exact quote or your interpretation of what she said?

The internationally recognised standard for an MS relapse is: the return of previously remitted sx's and or the worsening of sx's and or experiencing a new sx, for a period of 24hours or more and no sooner than 30days after the last relapse. If the time frame is less than 30 days, its usually thought to be connected to the prior relapse basically that the prior relapse hadn't remitted yet and your still relapsing.

Then there are psuedo relapses, which are not true relapses because the sx resolve when youve rested or cooled down again. So unless youve misunderstood, she's doesn't know what happens to people who have MS! Though having said that, what you wrote she said about your eye sx's is more correct than the other statement, damage to the optic nerve will cause those visual sx's because it will never be perfect again, its also a common psuedo the name for it is "Uhtophs phenomenon".

Cheers..........JJ    

ps lol i hope some of that made sense to you, my brain has started going wonkie again, grrrrr