It's different for everyone, Erin... When I was in the RR stage of MS, at first, I would go back to my 100% self, but with every flare, it would get a little worse and some SX would stick around and some would go.

Now that I have graduated to SPMS, the sx are all here to stay, but not as though i'm in a constant flare....just mild sx, but still there..

I don't seem to be gettin any worse, though...I hope it's the LDN..

Erin - the specialist I saw yesterday said that he does not like the label Relapse-remit. He said it came, in the beginning, from the cancer era - like you can have a remission of the disease and then have it relapse. He said it gives false hope and doesnt fit this disease correctly.

He said even those who have a complete "remission" like me, it gives us false security, because the disease is still active and still destroying brain function, even if we can't see/feel/understand/find it. It also makes us feel that our disease may be more progressive if we don't "remit."

Of course he said it much clearer than I did. It makes sense... but doesn't make it easier.

I hope you feel better soon! Take advantage of the good days when you can. Wake up expecting a good day. If it turns out to be a bad day, pamper yourself. Sorry you are facing this.

What is s/s? the thing you say you can't stop blaming youtself for?

In my siggy, I have I CAN stop blaming myself for s/s. Like my fatigue. I used to think I was lazy and a bad housekeeper. I'd want to lie down and felt like I was bad for doing that all the time. There are some other things also, but that is the biggest thing. It feels good to have some validation to how I felt. I wasn't lazy, I wasn't not dependable...

I'm curious too... What exactly does the "s/s" mean, is it an abbreviation for two different words?

signs/symptoms - it is an abbreviation used in nursing... oops! DH yells at me when I use "nurse speak." Its kind like "internet speak." LOL

Ok, I understand this now. My dad is a nurse (CRNA actually...which is a Certified Registered Nurse Anesthetist) But, for some reason he hasnt used "nurse speak" around us much. But then, he's probably dumbing things down for me...even tho I've been taking classes for medical transcription.


I think I'll go back to feeling uncomfortably tingly and spinny now (please, tell the vertigo to stay away from me. It's icky) The spinnies could be being caused by hunger. I need food.

There are times I could give you an intelligent answer like Snoopy and then there are times like now where all I can say is, "God only knows!"

I just went through a round of steriod treatments because of a relapse. I got a lot of my mobility back but the vision in my left eye still isn't right. Only time will tell with these things. But how much time does it take to 'tell'? I dunno. That might be different for everyone.

I keep hoping my body will not suffer too much damage and will 'hold on' until there are significant medical advances that will either cure the disease or be able to repair the damage.

And then there's the emotional effects to deal with...

Everyone has given you great advice about the R/R aspects of this disease, but once you understand that, I think what is most important is to learn how to keep the effects/symptoms in perspective. If we do not learn to adapt to our current "norm", no matter how ugly or annoying it might be, then the stress of that is likely to cause even more symptoms.

I remember the days when my biggest obstacles were intermittent fatigue, pain, numbness, etc., but by that point I had already experienced a very gross paralysis attack. Every day I woke up and thanked GOD that those intermittent and relatively minor symptoms were all that remained from that relapse, and hoped that I never had to experience that again.

The next time , I was again reasonably lucky with healing . . . and have fortunately continued to be "lucky" every time since as well. I have ongoing symptoms, to the point of being unemployable now, but they are seriously nothing like the way that I KNOW things CAN be.

You have to learn to go with the flow, Erin. You are still relatively new to this disease, and it is going to take time to adjust emotionally, but you do will have to do that eventually. That's almost the only 'control' we have.

Cherie

Darnit...I was hoping the remitting part meant that things would go away for a while...like before I started having the truly obvious MS stuff.

I do think I might be in a flare, or on the tail end of a flare. (the numb foot stuff, and some ON weirdness)

My right foot was totally numb for a month or more, and now it's not as numb, but it's burning and annoying, and feels like I've got Ben-Gay and capsaicin cream slathered all over it. It's annoying and I want all the numb and tingly crap to go away for awhile.

The vision stuff is annoying, but blurred vision isnt as bad as giant blind spots in the eyes, so it's easier to deal with sometimes, but when you have two or three things that constantly bug you, even if they're just residual symptoms, it seems to drive me nuts after awhile.

The only good thing about all this is that it's reminding me to keep stabbing myself with the needles (almost) every day.