Old subject.. need new explanations.

[marti]

Relapses have always puzzled me. I have almost non-stop symptoms, including pain. This has gone on for years. I usually get a few days of relief in between, but very few.

My neurologist just took me off Copaxone, saying that it is no longer helping, but she doesn't mention relapses. She used to classify my MS as being Progressive Relapsing. But then she started leaning back to RRMS.

Anyway, what are the defining elements of relapses? It seems like we are ALL in relapses most of the time. I get that by reading all of the posts and questions.

And if we are having relapses, what course of action is best? My neuro doesn't want to subject me to steroids because I have Osteoporosis AND I have weird reactions to steroids. They seem to make my heart rate increase to the uncomfortable stage. So I guess it's just treat the syptoms and plow through it the best I can.

I'm beginning to see how the rest of my life is going to be affected by MS.

[Marco]

I am sorry you are in this position and feel even worse that your neurologist isn't sharing more options with you. If you have never gotten a 2nd opinion, this might be a good opportunity for one. It seems you are at a crossroads in your MS journey and a 2nd opinion could be useful.

For MS patients that have relapses, they have a normal state and then increased symptoms during relapses. A relapse must be new or worsening of old symptoms that last at least 24 hours. You also must not have had a relapse in the past 30 days. If it's been less than 30 days it is still considered the same relapse.

For PRMS, a patient should have steady progression, experience relapses, but no periods of true remission. Having a handful of good days now and again does not qualify as a period of remission. Fortunately, if your neurologist has you categorized in one of the relapsing forms of MS the medications can still provide benefit for you.

For relapses, I would ask your neurologist if acthar gel is a possibility. Acthar gel is expensive, but if you are a non-responder or unable to take steroids insurance may cover it. They also have a financial assistance plan to help with the exorbitant costs (about $6,000/day).

So I understand your neurologist removing your from Copaxone, but not without suggesting another medication. Did she say she did not want you on anything else? If she doesn't want you on another MS medication maybe she will consider trying you on IVIg. IVIg may give you symptom relief and is used off-label for MS patients that do not respond to other treatments. If your neurologist still is resistant I would ask about LDN as a possibility. I would be shocked if your neurologist would prefer you completely unprotected to something providing at least some benefit.

[misslux]

You said in another post that you had the following:

I have Fibromyalgia, IBS, Graves Disease, Osteoporosis, Tendinitis, Osteoarthritis and who-knows what else.

What MS symptoms do you have that cannot be attributed to these other ailments?

[mercadies25]

My neurologist also has decided to take me off of Rebif, said that it was no long doing me any good. He did say he wanted me to go on Tysabri.

I don't feel like I am ever in remission. Imho I think that the neuros are not exactly sure what to do with us. I take meds for all the symptoms but never really feel any better. I have been off of Rebif for about a month now and really thought that maybe being off of it would make me feel a bit better, you know the side effects and all. Not!!!

I also have many other issues but I think that the MS aggravates all of them or vice-versa. Who knows.

I have had other neuros and this one has the best bed side manners and really listens so I am sticking with him till the end.

Scared to death of Tysabri but at this point what do I got to lose. The neuros don't classify us past the relapsing point because insurance won't cover any meds.

[SNOOPY]

Hi marti,

The general description of an exacerbation (relapse, attack, flare-up) is a worsening of old symptoms and/or the appearance of new symptoms lasting, continuously more than 48 hours.

There can be a definite line (so to speak), for many who experience an exacerbation, that leaves no doubt they are experiencing an exacerbation. I have been there several times.

The severity, length, amount of symptoms and any limitations caused by the exacerbation can be different for each person and possibly different with each exacerbation.

What is common after the exacerbation:

An exacerbation can resolve leaving the person not doing as bad as when in the exacerbation. Exacerbations can resolve completely or partially. Partially be the most common.

Partial recovery can mean you have residual symptoms (permanent), symptoms that come and go and possible limitations.

Unfortunately, you have other medical problems which can complicate understanding what is residual from MS it's self, or if it's even an exacerbation your MS vs your other medical problems.

I wonder if you are more focused on MS and discount what the other medical problems may be contributing to how you feel?

[BigA]

I wonder if you misunderstand what a relapse is. A relapse is feeling worse, but only after you felt better for a while and you have some new or increased symptoms that don't go away after a few days.

Have pain almost always? Not a relapse or a remission, just your base line. Did it go away or get much better (and stick)? Remission.

Are you the same for 10 years and since last week, something is worse and it's hanging around? Relapse.

Beyond that, I don't think anyone knows. I get bouts of symptoms which last a month - but they're stronger versions of what I've always had, so I don't call them relapses, even though some people might. I know I just have bad months. My hands hurt daily - I don't expect that to ever go away, in fact it will most probably get worse, but I don't know if that will be gradually or if I'll wake up and there will have been new damage overnight (relapse).

A relapse is pretty much new damage, a remission is repair. Whatever the definition people give to it there are 3 states, getting better, getting worse and staying the same. staying the same, even with problems and pain is the hope and goal of medicine. If you have the same stuff and it's not getting worse, that's not the worst outcome.

[marti]

You said in another post that you had the following:



What MS symptoms do you have that cannot be attributed to these other ailments?

This is a tough one. I never know for sure which problem is causing which symptom. Usually all the various specialists I see like to pile it all on MS. But, of course, the neuro doesn't do that. I've been on a merry go round for so long now with different doctors, different opinions and diagnoses that I almost don't care. Just take a pill and hope for the best. So many of the symptoms are cross-overs and mimic each disease. Scratching my head trying to figure it all out.