So explain a few MS things to me...
 

Hey all...
You know, I get more confused as I read more and more on these threads...I'd appreciate some clarity, if you all could help.
Anyway, as some of you know, I was dxd last Nov. with MS, after several years of sxs. It seemed that I would have a month of sxs, and then things would calm down. The 1st neuro said migraines were the culprit. The second consult said fibro. My latest neuro said anxiety/depression. So I stopped going to the doc, stopped noting sxs.
I had a summer full of heat reactions last year, and then last autumn, tightness, spasms and locking legs. This didn't go away, as well as bladder probls.
So neuro does MRI, said yes, subtle changes, together with new sxs spells MS. Copaxone and more meds.
But the spasms haven't dissipated unless I have IVSM, and then they only lessen for a couple of weeks. I get an IVSM every 4 wks.

So the questions:
Does a flare up last for months? Do the sxs of a flareup sometimes stay permanently?
Do some sxs dissipate and others stay when a flare lessens?
How does the neuro know if you're RR or SP? How do you know if you go into SP from RR? Not that I want to find out, just curious.

I swear, I feel more confused now then before I was dxd...I'd like to go back to just putting my ostrich head in the sand and not going to the doc...

Those are easy questions. The answers are: yes, yes, and yes.

That frustrates me, too. Some of my flare symptoms stayed a few days/weeks then went away forever (so far). Others now come and go. And others (numbness, weakness, etc.) seem to be here to stay.

lol sorry i was also gonna answer yes to all. I am finding my SX have not and are not going away so spms is more than likely the stage i am in. how long things last varies as with the illness and meds it hits us all differently and we react differently also, its an ever confusing illness. been DXed 3-4 yrs and have had some questions finally answered today not 4 yrs ago now, so it is a very frustrating issue Deb, D and yes its confusing and mind boggling, so dont beat yourself up over things, that we unfortunately have no control over, and as much as it may seem, we have no control understanding. I am slowly learning, that when i think i am getting a grip on things, i find out oopsie wrongo marylou, so I think its a time consuming illness that takes us extra time to catalog all the SX and be able to recall that this was that and that was those.... Hang in there Deb, any time you need an ear we are here, and so many of us are going through it or have:hug: you are not alone my friend

My first flare (2003) lasted about three months...both of my legs were numb. It resolved itself before I could be dx. My next flare (about two years later in 2005) lasted about five months. I had double vision, L'Hermitts, Bells Palsy, dizziness, numbness and tremors. I have permanent nerve damage from that flare. My right hand and arm is numb. My Neuro says it's permanent. I have regained some use of it back...or trained myself to use it.

I don't know how they determine when you've gone SP from RR. I think it's when you see just a steady decline with no recovery but I could be mistaken.

It's a tricky disease with no two people the same. I can see why it's so hard to dx if you don't have obvious lesions or your LP comes back normal.

I feel fortunate to have gotten back what little use I have of my right hand and arm. There for a while it was completely useless and that's a scary feeling.

Thanks...I contacted Northwestern about that stem cell transplant they're doing on MS patients...got an email back asking for more info, like acute attacks, dates that acute attacks treated with IV steroids, etc. I don't even know much about these things...like which form my neuro says it is? etc. My DH keeps pressing me to go through with this, but I just don't feel like it.

To make things worse, my work in my medical transcription class isn't going so well...I can't remember any of their freaking rules, so I keep making mistakes. Then when the instructor emails me back a review, I can't even understand what her descriptions of what I've done wrong mean...I feel like a four year old...and I really can't remember anything I read.
I think when DH and I go to Hawaii in three weeks the sand is where my head will land for sure now...

educate yourself before you jump into any treatment, like for me the reboot type of treatments are absolutely a negatvie treatment for me, Nero the Neuro told me I would possibly need a plastic bubble due to my low immune and lung issues, research and learn read. Dont jump in cause someone else thinks you should:hug: Wish I had a better answer Deb and yeah it does get down right annoying and confusing. All of my Debbies prayers and positive vibrations along with mine heading your way: hug: talk to your neuro also

First HUGSSSSSSSSSSSSSSSS
Second you got some answers here, I wondered if you take a medicine for the spasm symptoms??? other than doing IVSM when it starts up.??

I was just put on baclofen for the stiffness/spasms and it is helping a LOT!!
I figure you been thru these meds..maybe..but wondered.

I agree with Frank, about the treatments...I would never jump to a new treatment study without talking to neuro, but then also your regular doctor, but also lots of your own research.

Have a great time away, sounds good, I so want to get away with just hubby...but it will be a while. We do go away this weekend for a wedding,.but that is all seven of us travelling 8 hours away....fun fun...hugsss and good luck, sarah

This link explains the categories:

http://www.mult-sclerosis.org/whatisms.html

As is apparent in the graphs, RRMS can have relapses with complete remissions, or relapses with only partial recovery.

SPMS starts off where RRMS leaves off, but then moves to a slow progression with no real remissions any more.

Cherie

I would love to tell you I am not still having the same flare up from August I would love to tell you that. Unfortunately I am still having the same numbness problems and the ON started before Christmas and it's still there too. 5 days of IVSM and 3 rounds of oral steroids later... it is all still there. Sometimes I have really fun things happen like cog fog or my joints locking up or stabbing pains in my spine. Fortunately the roids helped with those, but the rest is still there and I get frustrated with the RRMS dx because i have yet to see it remit.

It's frustrating. And it's confusing and the more you try to figure it out the crazier you will become.

The longest flare I've had was three months. I've had one sx fully remit, two stay, and the rest hang out in my "MS grab bag" and appear on and off just to make life interesting. :rolleyes:

They still say RRMS for me. They are keeping an eye on me 'cuz I have some atypical stuff going on, but the specialist feels that he's comfortable with that designation right now.

I agree with educating yourself before doing any treatment. It took me months to choose between the CRABs and the final choice came down to some past issues I've had.

I'd also have your doc look into some of the anti-spasmatic meds out there instead of having IVSM so often.

Hope things get better soon. :hug::hug:

My first and only major flare seemed to last about four to five months. IVSM did not seem to help. I really do not understand this whole MS thing either. :eek:I never experienced a complete remission. My muscle spasticity has remained as well as burning pain. Other symptoms come and go. But they say I have RRMS too, and that I am stable despite increase in number of lesions in last year. Of course, I was dx at the age of 50 and probably had ms for several years with minor symptoms prior to dx. I have decided not to worry about what type I have at this point.

It does seems like you are on IVSM too often. Or are you describing pulse steriods? Steriods can really rob your body of calcium. Have you tried baclofen or something similar for spasticity?

Research all of the treatments. I think you are supposed to give copaxone about a year before you can decide it is not working for you.

Thanks for the info...I am on baclofen, and the NP just increased the doseage, as well as increased the gabapentin for pain. But the IVSM monthly takes the sxs down to miraculous levels.
I just got back from PT...I first went last Tuesday. He couldn't believe how bad I'd gotten. I could hardly walk, and I was dragging my rt. foot and could not straighten my legs to walk straight. I'd already increased the baclofen to 60 mg/day.
Last Thur. I had the IVSM. I walked in to PT today, and he couldn't believe the difference.
So after about 2-21/2 wks, I'll stiffen up again and the pain will increase. And I'm scheduled for an IVSM after 4 wks. I go to Hawaii the next day, and see a different neuro when I get back, so I'll see what he thinks about all of these meds/ IVs. Until then I just want to be able to walk and sleep and not go to the bathroom in my pants. Just until then...

Barb, I don't think the IVSM is pulse...just a regular ole IV.
Maryann, it took you so long to get dxd, even with all those sxs. It sucketh...did your ON last long? I keep getting different eye sxs, but they don't usually last more than 10-15 minutes.
I worry so much about what all of these meds are doing to my vital organs. And I just feel like I don't have the answers from the neuro/NP that I need to understand what is really going on here.
Thanks for all the info.
Oh, by the way, we go to Maui for a week and Kauai for a week. At first I liked Kauai more, but Maui's really starting to grow on me:)

Debbie, I guess I just never have heard of having IVSM every month. Do you receive it for several days? Do an oral taper?

Barb,
The first month, the neuro had me do a 3 day IVSM with a 15 day oral taper of oral prednisone. But I react so bad to the oral that I called him and they discontinued the oral.
So they decided to give me a once a month IVSM of increased SM without the oral taper. I notice that the IV meds last about 2 weeks before the spasms return in full force, and I have bad bladder probs again. I get so stiff that I finally got the cane out of its hiding place, because I just couldn't walk well at all...and I am so stiff and bent that I look like my 87 yr. old FIL with Parkinson's.
These spasms are bad...and as much as I hate being on the steroids, what with the metallic taste and the headache, it's such a relief to be able to walk like a "normal" person and not worry about not being close to my bathroom.
I know that the steroids are probably taking a toll...I worry about it, esp since the neuro hasn't talked to me at all about the effects.
I sure hope that you get to feeling a bit better...take care...spring break's coming soon!!:D

Does a flare up last for months? Do the sxs of a flareup sometimes stay permanently?
A flare can last for months, or it can be shorter in duration. Often the symptoms of a flare remit, sometimes completely, sometimes partially. But, yes, they can remain permanently. These are often referred to as residual symptoms.

Do some sxs dissipate and others stay when a flare lessens?
Yes; this can happen. Some symptoms may go away, while others remain.

How does the neuro know if you're RR or SP? How do you know if you go into SP from RR? Not that I want to find out, just curious.
NMSS says that, before the disease-modifying medications became available, approximately 50% of people with RRMS developed SPMS within 10 years. It likely takes longer than that to develop SPMS, if you're on a DMD, which is designed to delay the progress of the disease. If you have SPMS, your disease would progress more steadily than before, and, you may or may not continue to have relapses.

~ Faith

Hi Deb,

I've had relapses with new symptoms that disappeared within a few months. I've also had them that lasted for almost a year then disappeared. Two relapses were well-defined and undoubtable. Others have been more subtle that sort of crept up on me.

IVSM never seemed to help me much. I had it twice and things seemed to get worse. If I need it again, I'll just have a lower dose for three days and no taper. The taper seemed to cause most of the problems.

Enjoy your trip to Hawaii! :hug: :)

I hope your appt with the new neuro answers some questions and maybe he'll be able to offer a better treatment regimen.

i am tapering now but am doing ok, was curious, is it the taper Wiz or being off the full dose, i have read about others and their tapers not going well, kind of makes me wonder if its not the fact we dont have the full dose from the IVSM? just a thought, I remember my first taper off of the IVsm i did not in any way behave nicely, omg thats my trouble with the tapers is my angry or snappiness, not angry so much, just real short and snappy,

I are not a nice steroid people :p

flairs and the aftermath
 

One reason we don't like flares is because it can leave behind some damage that doesn't go away. So taking the meds can hopefully cut the flares down by 30% (hopefully)
I tell people this: recovering from a flare is like a bouncing ball: The ball doesn't bounce back as far as it did on the first bounce.

Subtle things can be left behind. In the very early days I think I recovered completely....but maybe I didn't. I just didn't know what I had going on so I was oblivious to the fall out.:confused:

Anyway, the bouncing ball explanation works for me.:winky:

When you stop having distincted flares that "heal" you may be on your way to PPMS.....but it can be confusing as I have friends with MS that appear to me more as PPMS but their docs say they are still RRMS.

I'm just hoping the stem cell thing works like it sounds it might. If it does...I'm first in line before I get too old to risk the chemo.