My turn - the next step in my MS

[Lulu54]

I  had my first IV solu-medrol today. Then for the next two days I am taking oral dexamethasone 200mg to finish a three day treatment.  We will see how my body reacts because this is a first for me.  The only other steriods I have had in my life were a small tapered dose for poison ivy.

I was at the neuro's today, and as I suspected, I am in a relapse.  My gait has deteriorated, my speed is slowed.  my right leg is weak and struggling to keep up with the left.  My fatigue may be the MS but it can also be a by-product of my body working so hard to get around.  I can honestly say I have had no pain with this episode.  Everything points to spinal lesion activity.

I was rather bummed by this, but I have to remind myself this is a relapsing and remitting disease.  My next phase then has to be remission, right?  I also can say this is my first relapse since dx in Sept '08, so i have had a longer stretch of relatively good health.  I should mark 2009 as a good year in my diary where my body stayed quiet.

The neuro will see me again in September to see what effect the steroids had on this relapse or if this is a progression in my disease.

This disease sure can be a Lulu, right?

[janbubears]

the pie sounds great can u send it to uk by tomoz  PLEASE   ha ha lol xxxxx

No voice change !! but i said to my sister today why have started trying to clear my throat all time since sterted the treatment feel like i need too ??

LOl jan xxxx

[Lulu54]

You guys are all so sweet to rally 'round ... as I said in the beginning I have NO pain at all with this.  I have had little sleep, and my family is eating very well.  My house is still not clean, maybe tomorrow.

I had a 90 therapeutic massage this afternoon and she found all the hot spots.  For the first time ever in the two months I have been seeing her, each time she found one spot with knots and kinks and released those, it felt like it just moved to an adjacent pointShe chased them all over the place. I laughed and told her I hoped it would eventually all travel out of my finger tips.  I can only blame these sensations on the steroids.

Question for you who have done these 'roids --- did you notice a change in your voice?  I woke up the first morning sounding like Kirstie Alley.  My voice tires after a short bit of use.  Is it connected or just a coincidence?

So much for my questions - two pieces of pie are left so who wants them?  I'll even through in some ice cream if you can make it over.

be well, L

[LATW]

Oh I hope things go well and this will pass quickly!  

Hugs to you,
LA

[janbubears]

Hi lulu sorry to hear your news and lots love and good wishes..xxx

just let u know what effect the IV ,s had on me this past 3 x days not wanting to take the seriousness of your grief out the lime light just trying help.. but

im on day x 3 IV steroid tomorrow, i feel my cognitive thinking has vastly improved already.  i am not sleeping at all, only 1 hour here and there and i had that HUG thing going on in bottom of my ribs last night - funny not had it there before only in chest.

my arm numbness weakness and pins/needles for over 7 month in lft arm well no change of yet at all..

lots love jan xxx

[Nancy T]

Hi Lulu. Hope you are soon feeling peachy in every way. :)

[Udkas]

Sending hugs across the pond, I guess although for those of you diagnosed with MS you know it is a remitting/relapsing disease but after a lengthy time of remission it must come as a rude awakening when you do get a relapse.

I hope it's short and sweet and you feel like your old self in no time at all.  Your schedule is so hectic, and the time you manage to devote to the forum, I honestly don't know how you find any energy at all.

Take care,
Hugs your way for a speedy recovery.
Udkas.

[PastorDan]

So sorry to hear Lu that you and Alex are having issues as wellas Q.  Peach pie sounds good, though.

[HVAC]

Sorry Lulu.

Alex

[shermay]

Hi Lu,

Sorry to hear that your going through this.

In my personal experience, if you can feel pins and needles in your foot, then I would say IMO that the 'roids are starting to work.

Sorry to chime in so late, I dropped my Laptops Transformer on the floor - duh -

Sending hugs and love, and wishing you a speedy recovery,

Debs xxxxxxxxxx

[Lulu54]

Thanks Q.  Your presence here tonight and everywhere else on this forum is great to see - do you now have a laptop or are you ignoring doctor's orders and sitting upright at the PC?  


Please don't over do it, but really it has been great to read all of your responses.

And the pie was pretty darn good - we kept one and I made a Splenda version for my diabetic parents.  It makes up a wee bit for my ignoring them lately. Maybe I should go pick another peck of peaches for peck of  peach pie party?

[Quixotic1]

Even IV steroids can cause bleeding in the stomach.  With exercise the blood flow to the stomach and internal organs is reduced and their action is slowed.  That could be a way to feel the effects of the steroids.  

I like the Peck O'Peach Pie version of 'roid rage.  Could this type of behavior be behind the increase in weight with steroids???

Yes, you can feel better within 12 hours of a dose.

But, the heightened energy will also overcome that part of the "weakness" that was accentuated by fatigue.

I'll supply the copious amounts of French Vanilla ice cream for our Peck O'Peach Pie Party!

Quix

[Lulu54]

yes, I was warned that it will tear up a good stomach, which I already don't have thanks to GERDs and a Barretts Esophagus.  They say to take it with food and any stomach meds I can handle.  

I'm just wondering about the effects of somewhat strenuous activity of provoking the stomach reaction.

BTW - I made it through my 4 am to-do list and even made a good dinner tonight.  Well almost - the house still needs cleaned. I found other things to do while the pie was baking, like paying bills - my second least favorite thing to do, just barely ahead of cleaning.  Have I mentioned that I am a procrastinator?  - L

[Inny2009]

Lulu I am sorry your in a relapse! Someone said next step is remission (dont remember who or when..i know its up there!) so thats something good to look forward to!

Its good to hear that your foot drop is less extreme! I dont know know about the steriods making a stomach hurt..does it say to eat something shortly before or after having them? I wouldnt doubt that some stomach discomfort would be ...um...i dont remember the word lol...had?? anyway....sorry..With all those meds you know...its gonna take a toll somehow...but i would definitely ask your doctor and see if he/she prescribes anything or says thats normal.

Your in my thoughts and prayers.

Inny

[Lulu54]

Sharon, just wish me a clean house.  I could use that burst because this place is beginning to rival Q's collection of dust bunnies.  LOL

Everyone - a couple questions, please.  Is it a placebo effect or could I really be feeling a marked improvement already?  I have tingling in my foot rather than it being numb.  And my foot drop is less extreme.  I don't know how long it takes for the 'roids to kick in and work. I'm certainly willing this to be a relapse and not progression.

The other question has to do with the oral version and the stomach issues - I had no trouble all day.  My stomach was fine,  thanks to a morning dose of Prevacid and then some Pepcid.  I made it swimming when I was done at work and the physical act of swimming laps and jogging in the water made my stomach hurt.  At first I was puzzled, but then I remembered the dexa..  Would exercise aggravate the stomach with this toxic brew almost eight hours after I took it?


thanks again, L

[coco31]

Hi LuLu,

I too am sorry you have had a relapse. But what a refreshing attitude to have towards it!

I had IV steriods 4 times in the past year (and I've only been diagnosed a year)!!!!

I think by the 3rd time I knew not what to expect from the relapse but I certainly knew I could count on a sparkling clean house. Gosh all I wanted to do was eat and clean, eat and clean and as for sleep - forget about it.

Well LuLu I wish you a SPEEDY and COMPLETE recovery.......

Sharon

[sllowe]

Hey Lu,

Sorry to hear this is a relapse. Funny (as I should know) but I learn more and more about variations of relapses each and every time someone writes theirs up and it's then confirmed by the Dr.

Hope the treatment shortens it and the smell of pies are in the near future for your household.

Rest, rest, rest, rest.......
-shell

[Csativa]

Hi Lulu,

Not sure I can add anything other than my compassion over your relapse.  You seem to be such a "support post" (no pun intended) when responding to people that sometimes it is all to easy to forget that you are in it with all of us for the proverbial long haul.

I hope you get through this episode + steroids w/o too much difficulty.

Thoughts and prayers are with you.

Frank

[meg321]

Oh, Lulu, I am so sorry you are in a relapse.  I always put you on a pedestal..forgetting you are just one of us.

Maybe your trip caused it...??

Either my mind wiped out all memory of this treatment I am hearing about today, but I do not want it..ever !

And what are the steroids for, just the relapse?

I sound like i just got off the boat...

get better Lu....fast!

love, meg

[lovemy6monkeys]

Lulu,

I'm sorry you have to do the 'roids :-(

Did your doctor give you anything to help you sleep? Both times I had it my doctor gave me lorezapam (something like that, it is an anti-anxiety med not a sleeping med, but it "brings you down" from the steroids so you can sleep) Even with taking that I still would not sleep longer than 5 hours. It was like the second the drug was out of my system I was awake and there was no chance of me going back to sleep. I had my 2 courses of steroids almost back to back, so I had close to 3 months of waking up between 3 and 4 everyday.

I do hope the steroids work quickly for you! ((hugs)) and try to take it easy.
~Jess

[Lulu54]

Johnny -
Come on down to Dayton and I'll share.  I actually got them made and they are now out of the oven and cooling.  My favorite for the peaches is Paula Dean's peach cobbler - google that one and be sure to buy a lot of butter for the fixin's,

We stopped through Burnham's in New Berlin and bought them fresh out of the orchard.  They are not quite as good as Carolina peaches, but they sure beat the heck out of what we get at Krogers or Meijers.

Sorry for the interuption - go back to fantasizing.   Too bad I can't push the smell through the internet.

[johnnymutt]

Sorry Lu, could you repeat your last post without the word peach pies, my favorite and only type of pie that I'll eat. All I got out of what you said was...........

Quote:
    Thanks all for the loving comments and tips - I need them all, as usual. I finally unwound last night and went to bed at 12:30 only to awake at 4.  It wasn't nocturia, I was just awake.  

I stayed in bed and fantasized about my day - I have a peck of peaches to make into pies, peck of peaches to make into pies, peck of peaches to make into pies, peck of peaches to make into pies, peck of peaches to make into pies, peck of peaches to make into pies, peck of peaches to make into pies, peck of peaches to make into pies,  Quote:

You see my dilemma :)

[essdipity]

Well, P is constantly at center stage in Lu's life!

ess

[steph74]

I hope you feel better soon, Lulu.

Stephanie

[Mand125]

Oh dear Lulu sorry you are going through this.

I think we need to get you and Dr Q together and we will take turns in coming to look after you both .

There has to be a joke somewhere about 5 p's relating to your last post - peck, peaches, pies, parents and projects, unfortunately my cog is to foggy to think of one.

Please take it easy - as I am sure you would tell all of us to do!

Mand