Relapse?
 

I have been diagnosed now for 2 1/2 years....and I have never had a remission! I have days that I feel better then others; but a true remission, no. I am dx RRMS.
When I go to my eye doctor, or urinary doc, and they ask me how may relapses since last visit? I just sit there and look stupid. I really don't know how to answer.
Anyone else out there that can relate to me?

Me. I had one "new" thing after I was diagnosed, but in almost 7 years, it's just as you said, some days I feel better than others. I've been waiting and waiting for that elusive remission, but I keep getting slightly worse between neuro visits.

I get several flares a year. I try not to count them. It seems like if I try to figure out how often they are (how many weeks/months apart) I end up jinxing myself and get a flare the next day/week.

Just because your Neuro has given you an RR title, doesn't mean that you are. When I was RR, I was having exacerbations about 2/3 times a year and then healing back to almost normal. Then as soon as I thought I must be cured, I'd have another attack. That's why there is so much "deniel" in RRMS Peeps.

If you are always having symptoms and never experiencing a remission, then you have either graduated to SPMS, as I did, or, if your MS is young, then you probably have PPMS?

Sometimes Neuros want to try a new DMD out on you and those meds are only recommended for RRMS patients. Some SPMS peeps have said they do well on some of those meds?

Hang in there Daisy..:hug::hug:

Don't forget that remission doesn't necessarily mean full recovery - I was Dx'd 11 years ago, and I still have stuff left over from the relapse that earned me a speedy diagnosis.

I still have fatigue, incoordination, vision problems etc. But I am lots BETTER than I was when I first presented. So I have had some recovery - but not complete. I still have those days when my processing speed is very much impaired, I am still affected by the heat, but even though it all still happens it isn't new to me.

When I was about two-and-a-half years in, I wondered what the heck RRMS meant since I still felt like cr*p and I seemed to feel worse and worse every day. I was sure I must have been developing SPMS, but my MRI's didn't show new stuff. My neuro told me I was having pseudo-exacerbations (which made me feel like a huge whinger, and hypochondriac until I spent some time reading here and discovered it was 'normal' and not as bad as it sounds).

I think my body (and brain) was adjusting to my 'new normal' and that is a long, difficult and often painful process.

I hope that his is what is happening for you too. If your 'first' relapse was a really bad one, you may have done some long-term damage that will have residual effects.

Of course, if you are experiencing true relapses it is, I am sure, a different story - I am just talking about my own experiences, and we all have a 'different' disease. Sorry you are feeling so low. As some have said though, SPMS patients don't have the same access to medications etc - so don't be in too much of a hurry to prove your doc wrong.

xx

My 1st neuro diagnosed me 2 1/2 years ago with rrms but my new neuro diagnosed me with ppms and prescribed ty along with other meds. Maybe you need to see a new neuro. I have my good days and bad. When I asked 1st neuro about ty, he said it's only when other DMD's don't work. I'm on my 3rd neuro since dx. It's been less than a year since I saw 2nd neuro and the drugs that I've been prescribed weren't mentioned by the other neuro's but people on the board have mentioned, so I was a little familiar with them.

I've had a pseudo flare or 2, but nothing that sent me to er. Is your neuro an MS specialist. I found one at an MS clinic who does research. This is a tricky bugger. I know how you feel. I wonder at times if I was missed diagnosed.

this is the reason why I will not go on any meds because my symptoms never go away. Yes I said that I felt better and everything had stop but that was only for a little bit they started coming back but just not as bad as it was. I am on enough meds right now so I think I can wait a little longer to see what is really going on with me.

Thanks so much for all your replies....When I went to see a Neuro-ophthalmologist, she thought I was probably SPMS or PPMS and not RRMS.

But, it takes me until noon to get dressed, and I am back in my PJ's by 5-6PM I feel like I am missing so much...I stayed home in my PJ's the other night while the rest of the family went out to dinner for my daughters 16th Birthday!

I just hate feeling sick and tired ALL the time.

Part of me just wants to ween off all the meds I am on, because, I think they play a huge role in my fatigue....but of course, I do not know that for sure.

Thanks for listening.

I was told once that I was "benign" MS...which I think is a load of stinky dog poo...no such thing as "benign MS". It does what it wants, when it wants to and it doesnt care what I want.

Told my neuro once that I considered myself to be RRMS (this was the same guy who told me it was "benign" MS) and he agreed with me. I told him that I didnt believe there was such a thing as "benign" MS. Now, when people ask me what "flavor" of MS that I have, I tell them it's just "MS". Labeling it with the alphabet soup of letters just annoys me for some reason.

It's also a heck of a lot easier to say "MS" than to rattle off the letters that go in front of "MS".