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Avatar universal

Woke up and couldn't walk

This all started last evening,I started noticing my legs didn't want to move,thought it was just exhaustion.

Got up this morning and had no control over my legs , they wouldn't even support my body.Finally after crawling to the bathroom----not a pretty site, my son got me my leg braces and they add little help.

Its as if they aren't getting the message from my brain to move.Is this possible.Plus I'm having repetive electric zings and zaps down my right leg and they are painful,thats been going on for 24 hours and my meds aren't helping

I did put a call into my neuro,but I got his answering service,I tried to wait it out to see if it would pass.

I really don't want to go to the ER with having the kids at home,I want that to be my last resort.I know they'd probably keep me.

T
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198419 tn?1360242356
I just finally read this whole thread.

YOU, yoooou my friend, your good you.....(I sure hope you've seen the movie Analzye This)

Seriously though, you are absolutely, nothing less than, TOUGH as NAILS!!!!!!!!!!!!!!
Stainless steel ones!

Were I'm from, we call most them idots you had to get through, to get things straightened out, - no good rat b'stads!

Be well,
SL
Helpful - 0
Avatar universal
I hope you are feeling better today T-Lynn.  I admire your courage.  Keep fighting. ...Craig  
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Avatar universal
You'll get your fight back,look its already back you wanna woop a PA.(lol)

You don't need to be in my debt,I'm grateful for all the supoort you and everyone here has given me.

When dealing with any disorder there's 2 ways of looking at it.it can either getcha or you get it and we are all gonna have downer days.

Right now I'm meaner than a junk yard dog after 3 days of mega dosing of steroids.I pity the fool that honks me off the next few days.Thats the side effects I hate.But with the added demerol it has seemed to be very effective this time.I hate the roids because they cause muscle loss and it took me 2 and a half months to gain back what I lost the last time.Fitness center here I come.Plus they cause me insomnia.

Maybe this neuro is on to something with the combo of meds.

I come to the conclusion this PA just needs educated about MS,the next time she honks me off I'll educate her the old fashion way.

Moki, I never let my children use there short comings as a disability,my oldest is dyslexic,she did well in school,next child in line is vision impaired,straight A student and now in the Navy she's studying nuclear electrical engineering,my son broke his neck at 2 and suffers from osgood slaughter disease and my youngest is just a whinner.But I always encouraged them to do the best they could do and use there disorders to there advantages.Now I get to eat my own words(lol)
And they remind me.

Please keep in mind what may not show today on there test it could tomorrow.I darn sure don't fit there classical text book pictures of MS all my reports are wonky,but i found a neuro from India that knows all the classic symptoms and they use there back yard knowledge for hard case dx's. What confirmed mine was a hot water test of the hands and feet.they went completly numb,plus a hot room test.That test everything went numb,fatigued,eyes went funny.not everything shows up on MRI's  for everyone.

Hang in there,keep the fight,I might need you to kick that PA to mars if she gives me anymore ****.

I just grinned when the Doc wrote the orders for the pain meds.How dare she call me a drug seeker,the old bat.

Boy I'm aggressive tonight,not good.

T
Helpful - 0
281565 tn?1295982683
Woman you are amazing!!!  If anyone can put it in remission it is you. I just wish some woop a** on that witch. I'm glad your legs are working a little better. I thank you for your support when you yourself are going through such a bad time. It was you that reminded me of the fight I lost and want back. For that I will be forever in your debt. My thoughts are with you. When my legs aren't shaking they are still able to kick, so if you need help there just let me know. I could kick that witch from here to Mars for you.
Moki
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Avatar universal
Right now the neuro won't consider the LDN because of this attack and he wants to give it sometime to subside and to get over the shock of the steroids.

Plus after all the demerol they have given me plus the pain meds I take they want to get the spasm under control first and ween off the other meds as they had me on zanaflex,baclofen,valuim, and quinine to control them.We are now tirating the baclofen up to a peeked dose to see if that resolves the spasms,tomorrow I'll be at 60 mgs per day and at 10mgs of valuim.I have weened off the zanaflex and quinine.But still on vicodin and oxy for the pain

The neuro said its gonna be a slow process and he doesn't want to add any unwanted stress to an all comprimised system.

I'll continue going to the fitness center as I get great results,plus its a  fun group of women.I plan on beating this back into remission.

With the mega doses of steroids My legs are working a little better,i've been able to get a few things done,just wish the spasms in my neck would quit.

But all is gonna be good even if it doesn't go into remission I'll continue the fight.

T
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Avatar universal
T-Lynn - Yikes I have just read  this thread!  Please God this goes into remission.  My first and only dx was SPMS two years ago  and since then I haven't improved, but you are younger than I am  and have a much better chance.  I am rooting for you.  Quix asked me to post on my experience with LDN for your benefit and I did so in another post  about physical therapy dated 10/2 if you are still interested.

Fight the good fight!
Marcie

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Avatar universal
Yes, it can go into remission. I never put my faith in doctors. Even they answer to a higher power.

I think the PA better thank her lucky stars that she got off so easy. I don't care that she didn't see your chart and that your a new patient, she had no right to call you a drug seeker. I suspect she got put in her place after you left. Actually, being a new patient, she should have treated you with even more respect!

I admire the way you handled the visit, and believe me, your calm decorum and organization made her look bad. Actually just showed the Neuro she doesn't belong working with patients.

I am the same way about pain meds. I don't take them unless it's an absolute necessity.

Your preserving attitude will help you overcome this disease. You keep fighting with all your might, and hey, if it means taking out the PA, so be it! :)

Enjoy the game tonight!

Hugs,
       Sheila
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Avatar universal
My MS has become spms,it ain't gonna get any better,what does he know,It can still go into remission,I have faith in that.He was afraid of the inability to walk for 2 days and my blood pressure was sky high but once they gave me the demerol it went back to normal.

His thinkng was getting the inflamation level down quickly to reduce the lesions near the brain stem was in my best interest.

I refused to talk to the PA one on one,it was for her safety and I ain't gonna pay money to see a neuro and get stuck with the PA.

Yes I told my neuro she said I was a drug seeker,her excuse was that she hadn't seen my chart as I'm a new patient there and they aren't aquainted with my history.oh,she can bite me!!!!

Yea ,I didn't disturb the rest of the practice,the neuro was impressed with my organization and he thanked me for the pharmacy report.He even ask if my UTI was being treated as at the hospital the ER doc gave me one cipro and told me to call my GP.

The neuro did tell me to keep an eye on the UTI as this the second one in 2 months and that can be a sign of bladder problems,well yea all I do is pee all the time.

The natural approach I think is his way of saying,the rebif isn't doing you any good at this point.

But we'll treat all the symptoms and treat you with mega doses of steroids.

I only take the pain meds as needed,don't like to live off of them

Heck I'm loopy enough,but I plan on fightening this disease with all I have if even includes taking out the PA doing so(l0l)
Helpful - 0
Avatar universal
Hi, T.

   Oh,ok, so she's the ORIGINAL Wicked Witch of the West. (wink)

   I suspect they were trying to kill something (maybe you?) with the 1500 mgs at a time.

   So, how did the PA treat you?

   Did you tell the Neuro that she called you a 'drug seeker'?

   Is anyone left alive in the practice? :)

   Not sure I understand his thoughts on about it naturally.

   I'm glad he was nice and refilled the pain meds.

   Sheila
Helpful - 0
Avatar universal
Seen neuro and his assistant,she definately doesn't need a costume for halloween shes scarey

I know why they only ran 3 days of solu-medrol hell they were 1500 mgs at a time,no wonder my insulin level is at 400.Idiot.I told him that they have to let me know when they are gonna run them that way.I keep glucophage at home for when I'm on steroids

he wanted to get the inflamation down quickly so theres no more damage to my legs

And he did fill the pain meds the vicodin and oxy right in front of the PA.

I can't wait until my old neuro gets his practice set back up,this neuro is nice but I don't know about his treatments.he said he just wanted me off the valuim soon.

He's nice and all but I have a hard time following his tactics.He really wants me to stop the rebif and fight it naturally,my gut feeling says not yet.

T
Helpful - 0
199882 tn?1310184542
Go get-um girl!  Let us know as soon as you get back today what is said.  I hope that everything goes good for you.  Lord knows you deserve something good to happen to you.

I'll be praying,
Carol
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Avatar universal
Hi, T.

   Oh my, I'd love to be a 'fly on the wall' at your appointment today. :) I wish I could feel sorry for the Neuro's assistant, but like the saying goes, "I'd feel for her, but I can't reach" LOL

   I'd like to see her head on a platter. "Drug seeker' my a@#!

   I don't know, I think she deserves that broom right where you'd like to shove it.

   We should all be as organized as you, T.

   And you don't have a rotten personality! I think considering you have MS, you have an amazing spirit!

   Don't ever give up the battle, the war ain't over yet.

   Anxious to hear about your appointment today.

   XXX
   Sheila

  
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230948 tn?1235844329
uk2
I missed this thread, but have just read through, you are an amazing lady, i was moaning about what i am going through but you have been surely tested these past few days!!

I pray i have strength like yours girl!!

keep us posted and hang in there, your kids must be so proud of your strength, though we all do get weak at times and thats not always a bad thing.

They sound so protective and supportive of you, you have done by the sounds of it a great job of bringing them up.

Love samantha x
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Avatar universal
I have wrote all my symptoms out ,when they started to occur.took notes on the PA's phone messages and I keep a journal of what meds I take and how much and when and I'm taking that with me tomorrow.

Neuro and I are gonna have along pow-wow tomorrow,I'm gonna be cheif and he's  the Indian and I ain't taking no peace pipe.

I did have my GP and electro-muscular DR fax me letters stating that I have turned down pain meds when offerred except tyelonol 3 in March after an attack and I was put in the hospital and vicodin after June's attack and I finished the last vicodin today it was only a 60 count bottle with no refill.So they were only takin as a last resort.I was given fentynal patches in March and used 1 it was high dose at a 100mcgs it made me sick and high,then they lowered it to 50mcgs the same effect after 1 patch and I called the pharmasist and I returned them,because of teenagers in and out and didn't want them in my house.he wrote a letter also that I returned the unused meds as I couldn't tolerate them.

I'm armed for tomorrow.I may walk funny,my brain don't function , but I don't seek pain meds.I'll cry through the pain first and when it hits a 10 then I'll take something.Did I need the demeral last night and today,Yes.It lessoned the pain to a 7 and I was able to rest some.No ER doc is gonna pass out demeral as a treat.

That bag of a PA ain't getting a broom from me she's liable to get it where she don't want it.

This attack is bad enough with out some idiot adding to it,heck I get that from the drunk next door.

Should I been admitted to the hospital for proper care oh yea,I'll admitt that.They left the port in just in case they run more solu-medrol.Heck I don't even know its there.

I even went to the fitness center this morning very light work out and had to have assistance with getting the legs on the machines but my friend was a great help positioning the legs.I have not given up the battle yet.I will go tomorrow also.

I even had a local officer and a state patrolmen offer to take me for my infusions today.maybe I should take them tomorrow,they are  buff and looks great in uniform.They could arrest the PA for impersonating a humon being.See I stillhave my rotten personality.

T
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Avatar universal
Good for you T-Lynn.  You are such a good role model!!  Does the neuro assistant have a license from the state of Ohio to be a health care worker?  If she does, I would ask her for her full name and license number and tell her you are submitting a complaint to the licensing board.  How dare she accuse someone of just wanting drugs for no reason.  Hang in there and prayers are with you...Craig.
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Avatar universal
I am so sorry I missed this thread!!!  You are something else girl!!!!  You have been thru so much and still you have a wonderful outlook and great sense of humor.

Please take care of yourself and keep that dr in line!

Lots & Lots of ((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))))

Doni
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Avatar universal
In that case, we all attract them 'cause I deal with them on a steady basis.

The Neuro's witch...er..I mean assistant called you a drug seeker?!!!

What did she say when you called her and chewed her out? Please tell me she changed her attitude. Geez, I'm so angry I want to kick her butt!!!!!

I used to say I'd never wish this on anyone, but I believe I have changed my mind. I'd like to see her walk a mile in your shoes.

When you go to your appointment, I would wrap a bow on a Halloween broom and present to her with a sweet smile.

I think she needs a job change.

Anxious to hear about your appointment.

T, you keep keepin' butt! :)

Sheila
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Avatar universal
I dealt with the dolts.dodo's dorks.dweebs and the dumb***es.I must attract them.

I went to fusion center,the ladies were great,I called the neuro's office asking how they had the solu-medrol set up,she stated they were only doing 2 days of 500 mgs and that should stop the attack.What a dork.I had it on speaker phone and told her that normal protocol was 5 days at a 1000mgs.For Lord sakes I need my legs.I told her that this the worst attack I have had since I had transverse myelitis in 1998 and I needed help.neuro had proceedures all day.

I ask for a plan to stop the pain,oh I blew then,she called me a drug seeker.That honked me off.I hate pain meds and only take as needed and last resort.Then the infusion nurse called directly after about my care and explained I couldn't walk without assistances and with out tripping and this needed resolved and that she could tell that I was im distress from the pain.

Okay that was it I got back to town,ER doc gave me demerol anyways to help subside the pain,I went to my pharmacy and got a print out for the last year of all my meds and faxed it to her and ask her to explain where was I drug seeking.Ohio has a central data base and it has everyones narcotics in it,goverened by the DEA.Laws are real strict.No answer so I called and chewed her out and told her she's never has met me and I deserve respect and quality care that all of DR E's patients get.

I told her to look at the last time I seen my past neuro,it was May and I don't go calling at every whim,I work through my symptoms as many theres not much you can do,but when you lose the use of your legs and bladder countrol and lets throw in the loss of left eye site and the bruise on my hiney from falling twice,that warrants a call to the neuro.

I see my neuro tomorrow and I have a list of symptoms when they started and a list of phone calls that I had made,the ER doctors made and the infusion clinic.I'm gonna set him straight and that his assistant needs to learn to work with his patients and I'm sure he gets med seekers but don't go honked off at everyone.

halloweens coming and I'm sure the assistant only needs a broom.

I learned if I don't speak up,they'll just kick a MS patient to the curb,the invisable disease with a laundry list of symptoms that are all invisable.

Looking forward to my appointment at 2.

T

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147426 tn?1317265632
I just want you to know, I'm with you all the way...no particular words of wisdom.  You're a stronger woman than I and a wonderful model and mom to your kids.  I wish you strength in your dealings with dolts, dodo's, dorks and dweebs today.  Quix
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Avatar universal
Hi, T.

   I am so glad you gave in and went to the ER. I am really impressed with the way you handled that ER doc. It's sad that we have to tell these guys how to do their jobs though.

   You are so right, we do need to show our children that all adversities can be overcome. "Where there's a will, there's a way". I'd say you are one strong-willed young lady.

   I can't wait to hear how you manage the Neuro's stupid assistant. :)

   I think the drunk is even dumber than I thought. (didn't think it was possible) In todays world, a 'problem with alcohol' is no defense. I agree, all the jury needs to do is take one look at you, and it's all over for him.

   T, you've got the best attitude & that's half the battle!

   We're all pullin' for you.

   Hugs,
          Sheila

  
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Avatar universal
Nanners,
I'd go if I good move,but I ain't giving into these Drs.They are gonna listen!!!!!!!!

Sally,
I feel like ****,the court case was cancelled for today thats a plus at the moment.He's wanting a grand jury trial,because he has a problem with alcohol.No ****! Thats his defense.Heck I'm the one with brain atrophy,I think his is just one empty crater.All the jury needs to do is see me with leg braces and they'll know I have MS and they are gonna throw the book at him.Prosecutors are gonna get him for inducing panic and causing my relapse.

Oh,I hope the moon is made of cheese,I'm hungry,dang steroids,thats all they do is make me eat.
Helpful - 0
231441 tn?1333892766
Hang in there Girl.  You are an inspiration.  Let us know how you're feeling, what happened with the court case.  If on-line support could get you to the moon you'd be there and back already. Hope you can start feeling better soon.
Sally
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Avatar universal
All I can say is...YOU Go Giiirrlll you go!! [Arm dances].
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Avatar universal
Right now I couldn't crawl to the bathroom if I had,darn port in my hand,I quess i'll get to ride the dog(lol)

Hate these steroids they cause insomnia,they make me a wired zombie and come day 5 I'm meaner than a junk yard dog.I don't like these effects.

I can't give into thise disease,I have to show my children that all adversities can be faced with a good challenge.

Plus,I'm to onry to let it win.

Carol, I hated PT,I personally didn't get anything out of it ,it was all structured towards balance and I needed leg strength to be able to use my legs.

My 16 year old son got honked off about how the PT wasn't helping so he got me my first months membership at the fitness center and drug me there.It has helped greatly.But its been a slow process.

Oh,I get to call the idiot assistant today,this is gonna be good,I won't quit calling until I get answers about home health doing the infusions.I'm not going to the ER at 11 am and turn around and go at 11 pm they are out of there rabbit a** minds if they think thats gonna happen.

I am still planning on going to the football game on friday night,I'll have home health splint the wrist with the port so I don't rip it out or get bumbed.

Well ladies its off to the shower and to the fitness center,before I start my day of dealing with idiots.

thanks for your kind words they mean so much to me your all  so great

T
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