Relapse #1 after diagnosis

[COBOB]

Well, sailing along with steady course and speed, and hit a storm.  I posted last week about MS fears and my vision and was trying to work through some denial issues.  Reality is that it is another round of Optic Neuritis.  In the exam, it was discovered that my right  index finger can't find my nose and that I have decreased strength in my right arm and hand.  The spasticity in my legs was also noticed and documented. So...

Three day pulse of IVSM, add Baclofen, MRI #3 in March, F/U with Neuro in April.

Like that movie title: "Reality Bites"

Bob

[COBOB]

The Domestic Partner can dish it back better than I can give it, so things are fine on the home front.  2nd dose went in at just a bit more than an hour.  Last one is sitting in the refrigerator for 2 PM tomorrow.  Can't wait to pull this IV out.

At this point, my mouth tastes like I have been chewing on aluminum foil.  Yuck!

The Nurse Practitioner warned me it may be a week or two after the IVSM before I see (if I see - I hope I see) any changes in my right eye vision.  

Round three tomorrow.

[Guitar_grrrl]

Bob,

I don't know about you, but my vision was kinda screwy for a week or so after IVSM.  I went to my ophtho. just to make sure everything was OK (one thing I DON'T have is ON).  He said it was just the IVSM.  

I definitely have to premedicate with some sort of antacid for IVSM.  I get a big boost of energy, and clean closets, sew on buttons, dust....LOL.  I also find myself with a rather short fuse, which is totally uncharacteristic for me.  DH just steers clear!

Speedy recovery!

[tiredaz]

Just allow yourself to growl a little, but know you'll be back to being a teddy bear soon.  And thanks for all the good info you pass along.  Take good care of yourself.

[johnniebear]

I  Wish you  the best,  I will say that sure is multitasking   :-}}



take care

John

[COBOB]

Getting my second dose of IVSM right now.  Trying to work at the same time.  I pre-medicated with zantac for a day ahead.  No heartburn.  Actually slept 6 hours last night.  No changes on vision but I have that "Day 1" energy boost for the steroid.   Other than that I havn;t noticed anything.  So I'd say all is well.  Be nice if the vision straighten out but that could take a while.
Thanks for all the well wishes.

Bob

[twitchychick]

So sorry to hear of the relapse with the ON.  You are in my thoughts and my prayers.  I hope this course of meds will keep any further relapses at bay.

Hope your "growling bear" self didn't send your Colorado weather down to Snow-klahoma. If so, a tip of the hat to you.  Well played.  Can honestly say wasn't expecting a foot of snow again. :)

Smiles,
TC

[jensequitur]

I think the heartburn and the dago red would cause IBS!

[COBOB]

IVSM... Too much dago red I guess. (I'm Italian-American, so I can own it)

Bob

[COBOB]

Not too bad right now.  One GM of IBSM on board and a couple of glasses of Pisano. Much better.  That and the Zantac I have been taking for two days to prevent the heartburn from the steroids.

I figure at this point I deserve a drink.

Bob

[michelleric]

Sorry you are not doing well Bob.  I hope the IVSM works as good for you as it did for me this last time. Feel better, Michelle

[RazCarver]

I don't know much but I think you have a right to be a a big growling bear for a bit. just don't bite. well not hard anyway. coworkers, friends and family don't like bites. grin.

[jensequitur]

I will say hang in there and give the Copaxone time to work, but don't forget it's only a 30% reduction in relapses.  It didn't work at all for me - I had 3 relapses a year on Copaxone.  

[sllowe]

Sorry about the relapse Bob. Three months already on the Copax - my how time flies!

I didn't realize copax took 3 to 6 months - lets hope it's 3 for you and you never see the next relapse.

Hope you see some improvement soon, Bob.
-shell

[anon07072023]

I was going to ask if they were going to bring the IVSM out to your house, or if you were going to have to go in for it each day. I see that you have already answered my question.

I hope that it helps your vision.  It's good that you're going to take some time off.
Uh-ho, "big growling bear," - better warn Geoff to be extra nice to you.  :-)

Baclofen has really helped my spasticity. I hope you find the same benefit from it.

Take care of yourself,
Kelly  

[mj111169]

So sorry to hear of the struggles you are having.  I hope this is the last setback you have for a looooooong time.  Praying for a speedy recovery for you.

Maureen

[territorial]

Sorry to hear of the setback. Just want to offer my support

[Sparkysarah]

Hi Bob

I am so sorry to hear that you are in relapse and it is just a sharp reminder of what the body is dealing with. When we are in remission it is easy to kid yourself that we are OK and life can return to normal..whatever our normal is.  I have nearly been diagnosed for a year and had four relapses in a year but am now on the oral drug trial and fingers crossed so far so good..I am sure I am on the drug rather than placebo.

Anyhow hope that the drugs do their stuff for you and you do not suffer too many side effects. I am sure that you have no option but to take it easy, so take care, get your rest and if you feel like being a grizzly bear for a while longer, then come and growl again on the forum.

Love Sarah x

[COBOB]

I think that is what I needed to hear.  I have only had one or two welts in the last 60 days.  I itch like heck for about 30 min if I don't take Benadryl about 45 min a head of time.  I guess I'm having some kind of immune response, but I guess I'm was looking for someone with a story that would say "Hang in there.  It has worked for me."  

Yep relapse can be depressing.  And we are about to start an "upslope" snow storm here on the Colorado Front Range.  It will be interesting to see if the IVSM and nurse make it here tomorrow.  I'm not worried.  I think I'm going to take some sick time off from work.  I'm betting that reducing the stress has to help.

Bob

[rendean]

Bob,
Sorry to hear about your relapse, as everyone including you has said, reality bites.
I don't have much to add to the other comments except that I can commiserate with you. I, too, have changes in my clinical exam very similar to yours, IVSM was given and an MRI was ordered. NO changes were noted on the MRI, good thing insurnance picked up the tab on that useless waste of time and money. HOwever, on the flip side it shows copaxone isn't the drug for me.

Here's to hoping you have a quick recovery!!

Ren

[doublevision1]

If it helps at all, I had 3 relapses in just over a year when I was first diagnosed.  During this first year I was on and then off Rebif, was not on it long enough to do any good.  Switched to Copaxone, 6 months later I had ON, and no relapses since.  That last relapse was > 2 years ago.  During that first year my condition was considered aggressive and my neuro was talking Novantrone.  But I gave Copaxone a shot - haha - and it would seem to have settled things down a lot.  Have had a couple of 'pseudo-exacerbations' caused by other ailments (right now in fact) but no true, major relapses.  

I`m glad they are watching the pace of your disease via follow up MRIs; that makes sense to me.  

[candy158]

Hi Bob, so sorry that you are having a relapse.  But, to let you know, the Baclofen worked for me, and now I take it every night before I go to sleep.  It seems to work.

I have had optic neuritis too, and it does suck, but you will get through this one too,
though, it might not seem like it at the moment.  

Sorry that this is also affecting your work, that must be very hard.  

Stay focused like people are saying, and just get through today,

take care, and chin up,
( your neck won't hurt that way) .....*S*
Candy

[COBOB]

Thanks everyone!

My brain tells me that this was a risk and that the Copaxone will still have a chance to work in the next 3 to 6 months.  The logical Bob gets it.  I can't control MS and it is going to do what it is going to do.  It will also do it on its schedule, but the emotional Bob doesn't have to like it.  

First attack to second attack was about 3 months.  Second attack to this relapse was about 6 months.   On the up side, the time between attacks is increasing (I did hope for more than 6 months.)

Just a bit frustrating. And relapse plus work is a bad combination.  Bob was a big growling bear most of the day today.

Bob

[Lulu54]

Darn Bob, you were afraid this was the case.  Here's hoping the IVSM kickstarts this recovery into top speed.

Yes, the copaxone takes a good 6 months or longer to unlock the magic and begin protecting us.  Hang in there - here's to lots of goood thoughts sent your way.

be well, Lulu

[supermum_ms]

I do hope you recover quickly!!

I maybe naive in my thoughts but i'm thinking that with you only being on DMD's for such a short time, this relapse is not outside the scope of normal (normal for MS that is) and probably too early to know if your MS is or has become more aggressive or not, does that make sense? Dont let dark thoughts get into your head space!!!!

Remember brain spasticity, so when you can, get that body of yours moving and stretching, stay positive and stay focused as much as you can, do something you love, just for YOU!

HUGS............JJ