This all started sunday afternoon,my legs started to feel wonky and out of sorts,nerves started jumping,the burning tingling and numbness had set in.

I got up monday morning and had no use of my legs,the brain and the legs were not responding to each other and the rule of thumb is 24 hours,well when the 24 hours were up I caved in and called my neuro's office.they were closed.

Well today no different,I was tripping over the fronts of my toes and I wear leg braces to prevent that.After 3 calls to my neuro it was try to wait it out until thursday,I have an appointment that day.

After falling twice in my kitchen and losing left eye vision,that was it,I called my x - hubby and off to the ER.I live in a small community the local ER has no neuro on call.The ER doc thought he was gonna be a jerk and tell me he couldn't treat me.

I got stubborn and bluntly told him to wake my neuro cause I needed help now not thursday.he ran blood work and urine sample.Came back slightly elevated sugar and another darn urinary track infection.He done the standard ER neuro test and then he rudely woke my neuro and told him I had extreme right side weakness.lost the function of my legs and my pain level was off the charts.They gave me demerol to take the edge off the spasticity pain and started solu-medrol treatments.

They can only give them to me at 500mg intervals,I don't do well at 1000mgs as my insulin level shoots up to high.So I gotta go back to the ER tomorrow for next dose and demeral inject until I see my neuro on thursday.

I told the ER Dr. I was not a med seeker ,but I needed help.

This has far been my worst attack yet,my biggest fear losing the use of my legs as they aren't good anyways.

Please listen to your bodies and don't let any DR. set ya aside.I did get some slight releif but that was from the pain meds.

I soley beleive this attack was brought on by tramatic stress,I slowly been coping with.

This is my third attack since March and they have all involved stressful situations ,so if all possible try to advoid them

Just neede to ramble

T

You poor thing. Sounds like it's been a tough few days. My thoughts are with you. I really hope you get some relief and see improvement soon.

I think you're right about stress. It cannot be underestimated as a factor in attacks.

Hope you're getting some rest and relaxation.

Cat x

Hi T~

I just wanted to wish you some healthy wishes and hope you feel better real soon!!

I agree that your break in was the culprit in your attack. Get some rest and take care of yourself!!

:) Cindy:)

This all started sunday afternoon,my legs started to feel wonky and out of sorts,nerves started jumping,the burning tingling and numbness had set in.

I got up monday morning and had no use of my legs,the brain and the legs were not responding to each other and the rule of thumb is 24 hours,well when the 24 hours were up I caved in and called my neuro's office.they were closed.

Well today no different,I was tripping over the fronts of my toes and I wear leg braces to prevent that.After 3 calls to my neuro it was try to wait it out until thursday,I have an appointment that day.

After falling twice in my kitchen and losing left eye vision,that was it,I called my x - hubby and off to the ER.I live in a small community the local ER has no neuro on call.The ER doc thought he was gonna be a jerk and tell me he couldn't treat me.

I got stubborn and bluntly told him to wake my neuro cause I needed help now not thursday.he ran blood work and urine sample.Came back slightly elevated sugar and another darn urinary track infection.He done the standard ER neuro test and then he rudely woke my neuro and told him I had extreme right side weakness.lost the function of my legs and my pain level was off the charts.They gave me demerol to take the edge off the spasticity pain and started solu-medrol treatments.

They can only give them to me at 500mg intervals,I don't do well at 1000mgs as my insulin level shoots up to high.So I gotta go back to the ER tomorrow for next dose and demeral inject until I see my neuro on thursday.

I told the ER Dr. I was not a med seeker ,but I needed help.

This has far been my worst attack yet,my biggest fear losing the use of my legs as they aren't good anyways.

Please listen to your bodies and don't let any DR. set ya aside.I did get some slight releif but that was from the pain meds.

I soley beleive this attack was brought on by tramatic stress,I slowly been coping with.

This is my third attack since March and they have all involved stressful situations ,so if all possible try to advoid them

Just neede to ramble

T

Good for you for standing up for yourself with the ER doctor! It's too bad, if we aren't bleeding or convulsing, they think it's all in our heads. The view on MS has GOT to change! We hurt, it's real, deal with us!

If stress is a factor then I should be blowing at any minute now. I'm going thru a divorce and having to move myself. Talk about STRESS. It's awful and all I want to do is get in bed and go to sleep. I sure don't need my legs or my eyes to go at this point, it'll have to wait until I've moved :)

Well good on you for being firm enough to demand treatment. What a frightening experience for you. Luckily your on good terms with your ex- husband. Must be nice to know you can call on him when needed.
Losing my sight would be my biggest fear i think. Hope you start feeling better soon.
Your sooo right about stress to worsen MS.. My dad passed away couple of weeks ago. Even though he was ill,and knew the day would come soon.To get the call at 2am, that news shocked my body to the core.

Hope the pain meds have kicked in for ya. My Prayers are with you hon..

Thanks girls,

I wasn't letting no ER doc walk all over me.When Toni can't walkie its time to see the dockie.

The ER doc wasn't a neuro,but he has fingers so wake mine up,if I have to be up suffering, so can he.

It really helped when my ER nurse's father had MS and she told the ER doc that her father went through terrible pain with spasms from the MS.

I gotta call my neuro and figure out his coarse of treating this with solu-medrol.I'm not going to the ER every 12 hours for out patient treatment.The ports already in,just send the darn meds to my house and send in the home health nurse to monitor it.

Glamour so sorry to here about your dad.

Stress does cruel things to ones body and having this disease it soars the symptoms.

Thanks for your thoughts and prayers

T

AAAAHHH CRUD, T-
I am soo sorry. Im just learning of this now, or would have written sooner. Ive been nuts this week.
Steroids? Again? Oh my goodness...are you handling this okay? I know how awful you do on these things, and again- so soon? I imagine its absolutely necessary or you wouldnt have said yes to it, but how are you doing on them? Is it helping? And, are your legs coming back?

Im sending you both prayers, hugs and strength-- Thursday isnt that far away, but what your doc will be able to do that you arent already having done is the question. It IS time for you to change meds...maybe LDN is the answer...or possibly Tysabri, have you considered it?

Sweetie, Ive gotta run to work, and am actually working until after 9 pm tonight, this is my latest day to date with meetings, but youll be on my mind all day. I hope you are feeling better.

Big hugs friend.
Nikki

Glamourgirl, very sorry about the loss of your Father :(

duttin, so sorry to hear this. Hope you feel better soon!

glamour girl, sorry about your loss. I've been there and you're right -- doesn't matter if it's "expected" or not, nothing can truly prepare you. Condolences to you and your family.

Nikki,

I waited it out as long as I could,but when ya can't walk for 48 hours it rings that bell that intervention is needed.

I hate the steroids and they were only started because I caved and went to the ER and demanded that the neuro be paged.

I had second round done today at the infusion clinic,but the PA assistant said the normal round is only 1000mgs and they take the wait and see approach.Done 500mgs last night at midnight and the second round this morning.

I called the PA this morning at the infusion clinic and put her on speaker phone and the infusion DR was appaulled at her behavior.I told her I couldn't walk she told me to get a wheel chair.Thats not the answer so the Infusion Dr called back an hour later and she was nasty to her.So I got no where with this.

They had the ER doctor come in to give me demerol for the pain to help me walk.

So when I see the neuro tomorrow we have to discuss alot.This has been my worse attack yet and on top of it I have another UTI.

I do think they need to do a med change obviously the rebif isn't doing it for me.I know having lesions near the brain stem doesn't help.I think some proper pain meds may be a start,I hate them as much as the steroids I don't like to feel loopy.The roids I'll tolerate if they slow the relapse.

No they legs are not coming back I fell in the hospital parking lot,I looked around to make sure nobody seen it.I felt like a fool.

Hopefully the neuro will have some answers.

T

Bearygood thanks for your thoughts

T

Girls,
Thanxs a million for yr messages to me. Yr all my MS Angels here. I'm doing ok.. Its my daughters 4th birthday today so i'm ready for 15 screaming toddlers for a McDonalds party. Hell, no way am i doing this at home..lol....

Toni,
Hope your meds kick in and give you some relief quickly. I've read your posts in the past. You sound like a strong women. Chin up sunshine, speedy recovery.

Duttin.
Im so sorry....I really am. You have just had TOO much to deal with lately...as I write this, Im reminding myself that working 15 hour days is not a good idea and that the stress I am under (and putting myself under) can only end up badly...Ive got one more bad day and then I have 3 days off...Atlantic city is starting to sound like a worse and worse idea now that Im realizing what really long days can do to a body....its only 3 weeks away. hmmm.
Go to your Neuro today and really talk. This is the old Neuro, whom you really liked, right? I hope so. Talk to him. Figure out a game plan and start it asap.....we cant have you falling in parking lots, although that shouldnt be making you feel like a fool- it happens. To all of us....and the PA should be shot...Im glad you handled that the way you did. Good girl.
Seriously sorry to hear you are still not feeling better, and I wont bother to remind you that sometimes it takes Steroids a week or so to really kick in. Youre going to be okay....your legs will come back. I know they will.
Hugs to you and truly, keep me posted...youre on my mind.
Nikki

GLamour Girl.
I had just read about your dad...so very sorry to hear that you are dealing with such a loss...my prayers to you and your family...how was that party? Id lose my mind!!!!!

Nikki,

No My old and lovable neuro is not back in practice yet.This neuro is okay and he has a good rep.,but office staff can ruin that.

I have everything typed out to discuss with him.I hope it goes well,I got a friend going with me.

The legs better come back soon,my house is falling apart.

Stop stressing or you'll be back on the roids and that ain't good.You go to atlantic city have fun

T

A/C is still 3 weeks away...and in the meantime, Im doing presentations all over the darn state! Im loving it, and the sense of accomplishment im getting from doing it, but honestly, Im losing my mind!
You, Im worried about..please keep us all posted and let us know how the doctors appt went.
Big hugs
Nikki

Nikki,

Appointment went okay.Basically told the PA what I thought of her phone manners and that when I called about the attack I wasn't playing games and a trip to the ER was uncalled for if treatment was done.

I'm not quite sure how I feel about this neuro his knowledge on MS is very good but his treating tactics scare me.

The 3 days of solu-medrol infusions were done at 1500 mgs instead of the usual 1000mgs a day.He don't beleive in taper offs.

The legs are slowly coming around and he did fill the pain meds.he switched a few other meds around to see if I can get some releif as the attacks have been to many.

He beleives the MS has become SPMS and that the injections aren't working,I told him to wait and see.I did have along talk with him and told him that he really needs to get his PA to realize that with MS,when a patient calls and says hey I can't walk and its been 2 days,its a full blown attack.I told him that I don't go to the DRs on a whim,because I'm bored and I am definately not a fan of solu-medrol.I waited it out as long as I could stand it.

Girl friend you need slow down some or you'll be the next in the infusion line.

ya don't need to lose your mind,it will be floating around in cyber space with mine(lol).

Make sure you get some rest and time for you this weekend

T

Hi Nikki,

Thanks for the message...
As for the party... OMG thankgod i had it out.. worth every bargin of a dollar. I went and sat in the McCafe and let the hostess do just what she gets paid to do.. Entertain the kids. They all had fun. While i chatted with the mums.

GG, Good for you! Im glad it was that easy for you! Wish on the weekends when I have all my stepkids around, I could hire a hostess to entertain them!

Duttin:
well. Im not even sure what to say to you about your doctor. 1500 mgs is alot, but if it helps, and didnt hurt your insulin levels...then thats great. You have to let the whole PA thing go...you did what you needed to do, now its someone else's problem to deal with. I agree with what you did, making her and the doc realize that this was a BAD situation was VERY important. Id have done the same thing...but now, forget it. As for not believeing in taper offs, my doc doesnt either....so far, Ive only done that once, and I didnt see any difference between tapering offf with a dose pack, or not. So, Im not sure what youll expect...for me, it doesnt seem to make much of a difference. But, im usually on the 1000 mgs a day for a full 5 days. Let me know how you do without the taper.

Trying to slow down. I have off the next 3 days, then a brutal week next week. Then, an easy week the 15th and the week of the 22nd its Atlantic City bound....at this point, I am looking forward to getting away from the homefront, but I do wish my husband was willing to come down for a night. I find it really strange to believe that someone else is footing the bill- offering all the bells and whistles, and he wont miss a day of work. True, he doesnt get paid if he doesnt go to work, but he does deserve a day off now and then, and its been over a year since he took one! Im curious as to what his reasons are, but he isnt giving me any...which is leading me full circle back to the trust issues and wondering what it is I DONT know....meanwhile, Im just trying to get thru work day to day until then...whatever will be, will be. Right?

You sound like you are feeling better, and getting around better. Im very happy for you. You were really scared a week ago. Ive been sending prayers and happy thoughts your way. please know that. Keep me posted.
N

Nikki,

I'm past the PA, having a few problems withe the steroids and no taper down,real gittery,hopefully it will pass soon.
Getting some use of my legs back,conserving my energy for the important things.
I passed on the JV football game and the cross country meet.Just couldn't do it today.Maybe I'm just learning to listen to my body.

They changed some of the meds and hoping that helps.Just really tired.

Hopefully you get some rest and you time with 3 days off.Try not to get to stressed over your up coming trip.Alot of men don't like to miss work,now for us women ,if we are offered a all expense paid trip we are always game.
I know you are struggling with trust issues,have you talked to hubby about them.Please do or talk to someone,this will eat you up inside and you don't wanna induce an attack over all this.

Taking each day at a time is all we can do and hopefully each day gets better for us all the way around.

I'm taking better steps in dealing with all the stress lately and my family has come to a big understanding if I can't do it,GET OVER IT!!!! It's not the end of the world.Counseling has really helped.

You have a good weekend and get some rest,ya know hubby may change his mind,especially if he see's how important it is to you.

T

Hi ya T. glad to hear you are feeling better. im proud of you for passing on the games, I know how important they are to you!
No, im not getting any rest..my husband dragged me to NYC to the Met (museum) today to see an exhibit he has been wanting to see since July...Ive been putting him off and puttting him off with 'when it cools down", however next week is his birthday, and this is what he wanted. I managed to walk around for 4 hours before I totally gave out and sat on the museum steps in total pain...came home and slept for 2 hours and I feel better...tomorrow, I have ALL the kids and Im doing nothing but watching them watch me lay on the couch!
I appreciate what you said about trust, and will continue to seek my own answers....he cant change his mind now- Ive made plans for one of the other girls to share a room with me! LOL. But more on that another time.
Im glad you are starting to say NO and seeing that you HAVE to take it easy...I worry about you.
Hugs to you and keep doing what youre doing....let me know whats up with the med changes..
Nikki

Nikki,

4 hours on your feet,bless you.I'd died in a half hour.He's a lucky man to have you.

It was hard to say no about the sporting events,but I'm no good to them if I'm at the hospital all day,then dragging butt and being grouchy.

Made the X finish staining the garage,no more ladders for me.Its time they start helping and me saying no.

It was 94 here today,that about kicked my butt.I had a bonfire with the kids,the heat from that still has me whipped.Thinking my left eye vision must still be in the coals.

Gonna try to get some groceries tomorrow,then the TV gets to watch me lay on the couch.

Stay on that couch and let the kids help you.

Next week I have feed the team for football,thank god we are paying for pizza,78 boys and only 4 mothers 3 of us with MS and the one mother said well we all need to make deserts so these kids have a variety.Well they're getting rice krispy treats,quick,easy and don't have to heat my kitchen up.
And if my legs still hurt I'll have my oldest drop them off.

This last attack really woke me up,nothing worse than not being able to walk,that really scared the crap out of me.Plus crawling to the bathroom takes a toll on my knees.

Get some rest tomorrow

T

You get some rest too. Its going to be another hot one...can you imagine, October and all this heat/humidity? We are having it here, too....weird.
Try to stay cool, and relax..Ill be thinking of you.
PS I Love Rick Crispie Treats! They are right up there with M&Ms! Those lucky kids....
hugs
Nikki

3 out of 4 mothers on your son's football team have MS?????????????
Pardon me but what the h$%^ is going on? Is it in the water? Isn't that a little odd to anyone?
A little background on my situation: I drove bus, one of my best friends did too. She got MS first and me 2 years later. Another driver is being tested for it and another drivers daughter inlaw (my cousin) has had it for 15 years. What has changed in society that we are catching it like the flu? Sorry for hijacking your post but geez, coincidence?