Erin, my numbness usually stays below my knees, on and off. When it travels up to one side and I feel unwell (as I describe it), then I know I am in a relapse.

It can travel up the other leg, it did for me in 2003, and it crossed over the whole groin area, being numb there too, yet functional. It only went up to the bra area on one side, the other side to the groin/pelvic area.

At that time I was treated with oral steroids. 100 mgs for three days, then 80mgs for three, 60 mgs..and downward to 10 mgs a day, and then 10 mg every other day for a week. Somehow this worked for me. It was a low, oral dosage, but for a longer period of time.

I hope your not in a relapse, "but when it doubt, check it out."

I'm supposed to go to the neuro on the 12th of may, but I dont know if I can wait that long. If the steroids would work on me, I'm betting the sooner I take them the better.

I'm calling the neuro in the morning, asking him about the steroids...

I'm going to go to my regular doctor and tell them to check me for infection or a low vitamin problem or something because of how tired I am.

This is really scaring me because it's sort of interfering with how I'm walking. (everything from my low back on down the right side is very stiff and doesnt feel like it wants to move very well)

I'm afraid to go to sleep because I'm scared I'll wake up in the morning unable to move.

I am so tired right now tho, that I'm going to bed like 3 or 4 hours earlier than I usually do (I'm insomniac) and I'm just going to lay here in the dark watching television...probably watch a Stargate Atlantis dvd. I'm not expecting to sleep, but I think if I lay there and just rest, maybe that will help.

I just cant stand that numb feeling around my hips and stomach. It's so freaking uncomfortable. Making me want to cry.

I dont really expect steroids to help me any. I was looking for my bottle of neurontin today (cant find it) and found my mom's stash of oral pred. (she had an allergy problem last year she was taking pred for) and I was so seriously tempted to borrow them. I think she had almost enough for a full prescription of 'roids that I'd need. (I have 6 extras that were left over from my oral pred Rx last fall...my stash and her stash might have equaled a full Rx)

She had like 5 bottles of oral pred and they all looked like they were close to being half full.

I'm so tempted to borrow hers, but I think I want my own Rx...

Right now I kind of feel like I did last year after I had IVSM and had the crash a day or two later (didnt get the taper for that) I feel like I did about 3 or 4 days after the crash...still wiped out but able to actually get up and walk across the room to the potty.

All I want to do is sleep. I just dont sleep in my bed, but stick me in my computer chair and I sleep...and that chair is no where near being comfortable to sleep in. (might explain the back pain)

First, I'm so sorry you're feeling so bad
Next, It sounds like things have gotten worse.
Lastly, I'd say if you can't see your neuro, see someone.

PS Hope you feel better soon.

I called my neuro this morning, and told him how uniquely crappy I was feeling. (worst I'd felt since I had mono in 1996) and how uncomfortable I am at this moment, and he said which do you want...oral or IV?

I told him oral. I've since changed my mind and want IV.

Called the neuro's emergency number tonight because I felt even worse and started to have a panic attack and that made me feel even worse, and the guy on call told me that yes, I can have the IV steroids...told me to stick with the oral over the weekend, and to call my neuro on monday and tell him that I want the IV. (and a taper! didnt have the taper the last time I did IV and the crash was pretty horrific)

That neuro also asked if I have anything for the anxiety. Told him I did, and he told me to "please take some". (I'd kind of forgotten that I had that) Then told me that if I ever start to get all anxious again like I was feeling, that I should take another. (I never take it full strength. I took half of the dosage he told me to take, maybe not even that much)

I cant believe how much calmer I feel now after 1/4 of an Ativan. (dosage was supposed to be half of a .5mg pill. I couldnt find my splitter, and I had a 1/4 of a pill already ready, so I just took that)

I just want to know how long before the steroids start to make the numbness feel better. (they never did work on me last fall when my left hand went screwy)

I just want someone to take these really tight, hard INVISIBLE boots that are squeezing my feet to death and making them numb off my feet, and the three layers of (also invisible) corset that are tied around my waist followed with the 5 tight leather belts should probably also come off too.

and my butt is numb! I HATE having a numb butt! That happens when I sit on a hard chair or bench too long sometimes, but that always goes away when I stand up. This isnt!

I think this is torture. I'll admit to a ton of unsolved murder cases for the last 100 years to get this to stop.

Just wanted to let you know I'm thinking of you and hope comfort will find you real soon!

I'm sorry your feel so miserable! I really hope the steroids help quickly!

Feel better soon!

Kristie

Continue to keep us up to date. Wish there was something more I could do than send you cyber hugs.

Do hope your sx improve SOOON.