[Debbie D]

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...

[Blessings2You]

Originally Posted by Debbie D

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?
...

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.

[weegot5kiz]

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 you are not alone my friend

[Kitty]

Originally Posted by Debbie D

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...

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.

[Debbie D]

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...

[weegot5kiz]

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 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

[sabimax]

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

[lady_express_44]

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

[legzzalot]

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.

[FinLady]

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.

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.