Well, that didnt last long, did it?
 

The numbness is back! :mad:

This time it's mostly on the left side. (when the flare started in late April, it was on the right side and made it's way up the left)

It's not as bad as it was last month, mostly just an irritating bit of numbness, and it's not painful (yet!) Just annoying. I am noticing a bit of stiffness coming back (knees feel weird and tight, toes feel a little "curly") I feel like I'm not walking straight again. Did some PT yesterday and my heel-to-toe was more like toe-to-side-of-other-foot-and-fall-into-the-wall than it was heel-to-toe.

How happy am I that I have a neuro appointment tomorrow? I'm not really that happy, but glad that I actually get to see him and he'll be able to examine me and find out if I need a new batch of 'roids or not.

I dont know if it's the same flare coming back for another crack at me, a new flare, or if I did way too much yesterday. I did a ton of laundry that I couldnt do the last month because I was sick or my sister was hogging the washing machine, and then I went to PT and they beat me up. I felt like I'd been run over by a car when I got home. And then I did more laundry AND cleaned my room and folded a ton of laundry to put it away.

I just dont know if I did too much and angered the MS trolls responsible for my torture. I'm getting some funky toe spasms in my left foot that are bugging me, and the outside of that foot is almost completely numb. (hope I can drive to the neuro tomorrow)

I thought the steroids would last longer than a month. (last bag of IVSM was on May 6th, last oral steroid was May 20th) I still hadnt been feeling all that great, and was still numb for most of May, but was starting to feel better sensation-wise (numbness was receding) a couple of weeks ago, and I wasnt falling asleep every 2 seconds.

I've been so tired the last couple of days. I fall asleep whenever I sit down. (left leg and butt go numb when I sit down too) This morning, I woke up feeling kind of queasy and thought I was going to be ill. Had a stomach ache and felt like I hadnt slept at all. (which is possible...think I fell asleep around 4am and woke up at 930am)

Feel a little bit like my legs dont want to move well when I walk. Back hurts a lot and my neck hurts too.

I also had a few minutes of a weird double vision tonight. Instead of being side to side, it was horizontal. Saw an airplane flying by tonight, and there was a double image of it underneath the plane. Rubbing my eyes didnt help that much, but it seems to have gone away now. My eyes feel really tired tho.


This is just not fair. I was hoping those steroids would last a lot longer. (the IVSM was 3 days, 1 gram a day. The oral steroids were a taper, starting with six 10mg pills x 3 days, that tapered down by 1 pill every 3 days. Actually started the oral steroids before I switched to the IVSM, and picked up where I left off on the oral after the IVSM was done)

I'd like to say lots of expletives now, but I dont want to get kicked off the forum for having a potty mouth. So, just imagine that I'm mad and cussing up a storm.

So sorry you're facing the MS monster again, Erin. It sure seems to me that the steroid results should be lasting longer. Sometimes they take awhile to work, but not wear off so soon???? Maybe you're right in thinking you did too much on a good day!! They're so rare, it's hard not to take advantage of feeling somewhat "normal".

Good luck at your neuro appointment! Hopefully you'll get some answers!! I HATE THIS DISEASE!!!! Take care.........:)

I want to go to sleep, but my "friend" Insomnia is here and wont leave me alone!

My head hurts now, my eyes feel kind of funky and blurry and a little twitchy. (little photosensitive too. computer is making my eyes water) and my neck kind of hurts. (maybe I picked up too much heavy laundry yesterday among having to do PT stuff yesterday?)

I'd love to sleep, but a little worried that I'll have something new to show to the neuro in the morning. Not sure I want to do more steroids...kind of tired of bruises and cuts taking forever to heal because the 'roids suppress the immune system somewhat. I still have the bruise from the IVSM and the last IV was May 6th!

I think I'll try again to sleep tho...hope I have the time and energy to shower in the morning. Hope my toes are awake too.

Good luck today Erin. So sorry for the crappy monster attacks. Hopefully your neuro can give you some kind of insight as to what's going on and how to fix it. Or at least make it somewhat bearable. Hoping you just overdid it yesterday, and your body wil stop attacking you.


ps if your neuro finds a way to fix the numbness, please have them call my neuro and tell her. Maybe we can get them together for a play date.

Erin, Many neuro's will not rx steroids for sensory symptoms. Numbness can remit on it's own and some have numbness as a permanent symptom. Steroids can also be a temporary solution to an on going symptom.

To be considered a new relapse there needs to be 30 days between the last relapse and the new.

Im sorry you dont feel well Erin. Hang in there. :hug:

Ah Erin,
I hope you feel better SOON.

Erin, sorry to hear all this. :hug::hug:

Snoopy is unfortunately right. Many neuros won't prescripe 'roids for sensory stuff unless a leison is active. I've never had an active leision, so haven't done IVSM.

Hope the neuro can give you some good advice. Hang in there! :hug::hug:

Bummer, Erin. So sorry for your maladies. Hate it when Snoopy's right, too.

Let us know what the neuro says, k? :hug::hug::hug:

:circlelove: (((((((Erin))))))) :circlelove:

It's not just sensory. It feels like my legs dont want to move very well. When this flare started (this is probably the same flare, same crap different day) I could tell that there was something not right in the way my right leg was moving. The lady at the PT place (I was taking my mom there for PT for a broken shoulder) watched me walk and said that it looked like I wasnt moving my right side very well.

I've been tripping a lot again this week. On the left foot and the right foot. Now both my legs feel weak if I try lifting my legs up.

I dont like the whole tripping problem. I havent fallen yet, but I came close to doing that yesterday, just as I was about to go down the stairs.

This morning, my left hand and arm also feels weird. Sausage fingers, and I keep hitting the wrong keys when I type. Taking forever to type this because I have to keep hitting the backspace and fix the errors. Hope the left arm problem is from sleeping on it....feels like I might have a problem if I want to do any knitting or crocheting later today.

update
 

Went to see the neuro today. He didnt even do a neuro exam. Just talked to me for maybe 8 minutes. Said it's still the same flare, no I cant have more steroids, good for you that you're doing PT...take more baclofen, try to sleep more. He did ask me if I wanted to try another stabby interferon drug. I'm considering it now.

I dont really feel like he did much...and now I have to pay for that visit.

I felt kind of rushed...and now I think there's a few things I didnt mention that were probably important. I guess that's what I get for going to an appointment in late afternoon on a friday.

Erin,
I was kind of thinking it was the same relapse. I find that steroids need time to work. They have a big job to do in the body. No instant fix, sorry to say my dear. I wish it were true.

I have been doing steroids, it seems, since I was first Dx'd. Oral and then in 2005 when I couldn't walk I got 10 days of 1000 mg in the hospital. That got me walking again, our of the w/c, but in baby steps. I was so proud when I could walk two steps to the kitchen chair without holding on or falling. Then in time 4 steps without smashing a wall.

I only get steroids when my mobility is affected, not for sensory or spasticity. Those can be handled by symptomatic drugs like Baclofen, Neurontin, Lyrica, etc.

As Snoopy said, some of us have that numbness, tingling, toes curling, burning, cold leg, wet clothes feelings, itching and crawling bug thingies, etc., going on all the time, or most the time. Things don't always remit either.

Give the steroids time to work, don't overdo anything, rest, do PT and make your energy last over the day, not with wasting it all in four hours. That will do you in and make the symptoms regress a day or two. You want to heal, so please take it easy.

I wish they could help you get some quality sleep. That would be restorative to your body and brain. Do you take more Baclofen at night and less in the day? It might help you sleep better. If you nap take it early in the day and not too long of a nap or your night sleep will be affected.

Be kind to yourself and rest instead of pushing yourself. The laundry can be folded later, cleaning done in increments.

I truly hope you take it easy or your symptoms could become permanent and you won't be a happy camper at all. Don't fight the steroid-effect, give them time, and work with them, to make you feel better. Okay sweetie? :hug:

My mobility was becoming affected. I didnt have the reaction time in my feet for driving, (couldnt feel the pedals AND didnt have the strength in my right foot to effectively use the brakes. Plus, I drive a stick) and I was using my mom's stair chair thingie to go up and down the stairs because I felt weak and my legs didnt seem to want to help me walk up or down the stairs.

Used the stair chair thingie to go up and down the stairs a couple of times today. Lazy. Lazy me... (my sister looks at me like she disapproves of me using the stair chair when I use it)

The neuro told me that I cant have steroids again for awhile. I had IVSM last summer in late june or early july. I had oral steroids last fall, and then I had IVSM with a prednisone taper last month. So, I've pretty much used up my allowance for steroids for the year now.

I was pretty sure this is the same flare going on. I'm just really impatient and hope that things go back to normal soon.

I'm hoping everything goes back to normal for you too Erin. Too tired to climb stairs is a sign of mobility issues and weakness.

Most times my relapses last 6 to 8 weeks. Two weeks coming on, four weeks with those nasty symptoms, and two weeks while leaving. Praying all the time for no more residual damage.

The reason it takes so long to come on, is because I am not sure how bad it is going to be, or if any new symptoms will appear. Last time was Vertigo, new for me. I had it eons ago, but a little different, this one was worse because it made me really dizzy.

So I used to try the oral steroids first, years ago. If they didn't stop it in it's tracks in about 3 to 4 weeks, it went on to become an acute relapse and IVSM was needed to kick it in the buttski.

If you have a stair lift in the house why not use it? Some people put in elevators. They are just another aid for us when we just can't make it up otherwise.

My neuro only gives me steroids with a 6 month rest in between. I am lucky, since I started on the LDN I went 18 months without steroids, or a relapse, or any MRI progression.

Here's hoping you do well once this relapse is over. :hug:

I begged my neuro today for some LDN...he called it Voodoo...I said I'd happily become a Voodoo priestess if I could at least try LDN. No go.

Tried to ask my regular doctor for LDN a couple of weeks ago. Again, bupkiss...nada...nope...aint happening. (that doctor's dad has MS, you'd think he'd read about this stuff and let me try it)

I've been trying to get back to normal as soon as some of the symptoms started to back off. I get the feeling that I need to back off a bit on going back to normal for awhile. I'm just tired of feeling sick most of the time.

I think I wont be doing huge laundry marathons again. (did pretty much all of it in one day) Then went to PT that afternoon to be tortured for an hour. Think I did too much that day.


I might ask my physical therapist if we can back off a bit on the heavy stuff they had me do the other day. I've felt wiped out ever since the laundry marathon and the PT on wednesday. (woke up yesterday feeling sick and wanting to do nothing more than go back to sleep)

I need to do that PT tho...I felt myself getting weaker during the worst part of the flare, and I think that's because of all the sitting around on my butt that I did.

Before this flare, the worst flares I've had have all been vision related. Those usually take a couple of weeks to get to their worst, they'll be pretty bad for a month or two, and then it takes at least 3 or 4 months (sometimes less) for things to get better. My optic neuritis flares always seem to recover fully...or at least near normal. I just wish the flares that make me numb would recover just as well.