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.
There is no need to suffer needlessly. "Sometimes the best care of the children is to care for the parent." wise, old pediatrician.
I am so sorry this is happening! I vote for the ER and the neuro on-call. The relapse may just be getting started - not to sound the pessimist. Don't take chances nor should you suffer in pain which will just make all the other MS sx worse.
You're correct if I can't care for myself how can I care for my kids.My son wanted to call an ems and I told him no.
Right now pain is an understatement.I'm gonna go to bed and think happy thoughts after a few meds and be optimistic that this will all be gone in the morning.If not ,if its worse I will go directly to the ER.
My x-hubby is staying the night just in case.
I don't recall if I requested a call back,my body was to busy trying to electicute my right leg from the inside out,if that won't make a grown person cry I don't know what will.
Ya know my dog senses something is wrong she has laid right next to my legs for 2 days now,she normally doesn't do that.
It's funny you say that about the dog. Gordon twice tonight got up and started licking my foot, both times it was spasming and I was trying to pretend it was not. Freaky...maybe Zilla can cypher a clue about it, lol.
I got the LESSON 101 last week about taking care of myself before I can take care of the kiddos... easier said than done.. I KNOW!! But.. its true...Hope you start feeling better.. maybe I can come over and crawl with ya to the bathroom?!?!? NOW THAT WOULD BE A SIGHT TO SEE!!!!!!!!!! :)
Please have your ex-husband take you to the ER. You could have had a stroke or something very bad happen. You guys made me go to the ER last weekend, remember? (or weekday I don't know) Now it's your turn. God sent your ex there for a reason and it wasn't to crash on your couch. GO! GO! GO!
First thing I've done this morning is check on you. I'm really worried that you are not better. The kids are old enough to take care of themselves. They need you to take care of yourself. You can't take care of them, if you don't take care of you. Please go to the ER.
I have talked to the neuro's assistant this morning,she took all my info and when the neuro gets a moment she'll have him call me,which he always does.
The legs are no better,the electrical volts are having there hay-day and fun with me,Darn they hurt.I feel that I swallowed the one Greek God that throws the lightening bolts and he's having a good old time.One heck of a party with my legs.Now theres the on going buzzying.he(the Greek God must have taken a bee hive with him) I know its no laughing matter,but if I don't keep my sense of humor,I'll lose it over this attack.That won't be good.My pain level has surged well over a 10 today.
I love to watch football,my son is a junior and next year my daughter will be in the high school band.
come on over we'll make it a race to the bathroom,I'm sure that would confuse my dog as she gives me a stupid look when I crawl to the bathroom.Oh,the cermaic floor hurts real bad on the knees but when ya gotta go ya gotta go.
Yes, I should follow my own advice,but in all honesties I will propably end up there for a 5 day stay.Not looking forward to that.But there staff is awesome.
My dog as wimpy , she is she's great comfort and my second X is always willing to come and stay,he gets the extra room upstairs.He's the one that called my neuro's office yesterday.
My kids do an awesome job taking care of themselves,my son started the laundry before school this morning and said he'd finish after football practice.my daughter she said she'll do dinner and dishes,they can fend for themselves.now I wish the DOG would learn to let het self out and back in.
Animals sense things,plus they are great comfort and don't talk back.Hopefully Zilla can clue us in (lol)
thanks for your thoughts and prayers.
I will keep ya all up dated when I hear from my neuro,its nap time for now
Do you have a wheelchair or walker or anything that will help you at least to the bathroom. You might check in to renting one until this passes. If your neuro doesn't call soon then call again. That's what I do, I keep bothering them until they get sick of it and finally call.lol
I'm really worried about you, so please don't keep waiting around. If he doesn't get back with you soon then just go ahead and go to the ER.
Oh, my gosh! I haven't been on in a while! I had lots to do this morning. Doc's appointments for my boys.
Yes, I do, indeed have a clue for you -- If your legs aren't working, it's time to go to the ER. No walkie, go dockie. OK, girlfriend? That's my big city forensic clue.
When is your dockie going to call you? He'd better hurry, or you'd better get your little patootie over to the hospital! That's happened to me before, and it's no fun. Like my sage husband says, "It s no fun when it's no fun." Get back on the phone with your doc, see what he wants you to do, or get that sweet patootie to the ER. Pronto!
Let us know how you are! We'll worry from afar. Stay away from orange jumpsuits.
No I don't have a wheelchair nor walker,I do have a cane which helps.
have talked to the neuro's assistant and she was a witch I mean that in about the nicest form I can put it.She was very snotty on the phone when I called back.
She stated that since I have an appointment thursday afternoon,to wait it out.She said the neuro stated since I am a new patient ,I seen him 2 weeks ago, he'd have to wait and see me then.
Boy did I open a can of woop a** on her.I told her to tell that neuro that he has all my medical records and its time to open the d*** thing and read it.She's says what do you want the DR to do.
Oh, the wrong thing to say to a person that can't walk,feels electricuted and in severe pain.I told her for starters the pain needs to be controlled,I need to be able to walk,the electrical zapping I can tolerate.I told her fine I'd just go to the ER,she said even if I did the DR would tell the ER attending the same thing.I know this didn't come from the Neuro.He has a very good reputation for taking care of his patients.
She said after the neuro see's me on thursday that they'd start solu-medrol out patient at the hospital,I told her home health can do it in my home ,my safe haven and since I can't walk ,how in the sam heck do they expect me to drive there twice a day.I can't tolerate the 1000mgs at one time.
She did say she'd rediscuss this with my neuro and get back with me.I guess when donkeys fly,cause after I talked to her this morning she said she'd call right back and didn't I had to call them.
I've sat and cried since,and to add to it I have to go to court tomorrow to testify against the drunk that broke into my house.This is gonna be good.If I ain't there they can throw it out of court.
Is he back in his old clinic? Can someone drive you to where he is? You're in my same time zone, right, it's 5:00. He's not going to be there. Darn it!
If you go to the ER, you may not make it to court tomorrow? Or can you? If you can make it to court, I'd go to the ER, tell them you need some steroids. I know this will put you off the plan for the LDN, but you need to take care of yourself now.
If you hear from the neuro, tell him his staff is HORRID! If he wants to keep you as a patient, he needs better people working for him. You are in big trouble this weekend, and he was unreachable. What an idiot receptionist. No compassion. And to not return your call is irresponsible.
I'm so sorry you had to deal with all that while you feel so miserable, T. And on top of everything else you've had to deal with this month. So sorry. Your poor kids must be beside themselves with worry. It's nice of your ex-husband to stick around for you guys. Good dad.
Please take care of yourself tonight, so you can go to court tomorrow. You need to show your kids that people can't get away with doing things like that. I hope you're able to go! That idiot can't get away with that! Just to show your kids what's right, how the courts are there to help you. I know it will be hard.
Let me know if you hear from the doc. IF he even gets your message. Take care of yourself. Feel better.
made my mind up I'm gonna go to the ER.I've waited this out as long as I can.I feel they can call the D*** neuro and disturb him.now I'm having really bad pains down the sides of my neck and my left eye is really blurry.I have warped in to H***.Nothing has lessoned and its been since sunday afternoon.
If this isn't treated now its gonna just get worse.
Ok, do you know if the courthouse has a wheelchair you can use? I think with all the federal laws today, they may have a wheelchair for people to have access to, similar to airports etc. When I was on jury duty in DE, there were wheelchairs around. If your ex helps you, are you mobile enough to get into the courtroom?. I think that if the judge sees you and how sick you are right now and you made all this effort to get to court, then I think the judge will have no sympathy for the drunk. However, if you really can't get in, then call the court to explain the problem. The courts around here also have transportation for people who need help getting to a hearing or trial. Maybe yours does too? Remember you are the victim and have rights. So hopefully you will have access to transportation and a wheelchair.
Now about that neuro. My wife says that if you go to the ER after court, they will probably admit you and you could get help before Thursday. What a horrible evil assistant. Good Luck and remember your guardian angel will be with you tomorrow.....craig
Wow you are going through such a horrific time. I can't believe that assistant treated you so awful. I don't usually wish ill on anyone but this one needs to have a wake up call. That is totally unacceptable. On top of it all you have court. I'm amazed at your courage and strength in all that you are going through. I hope everything turns out good for you. I will put my tassles on just for you tonight.
Take care of yourself
I did go to the ER. I gave in after I fell twice and bruised my arrss.Plus i lost total vision in left eye.
After several blood test and a urine test,they came back slightly low potassium,slightly low white blood count,elevated glucose and a flippin urinary tract infection.Thats the second one in 2 months.
The ER DR. was not nice at first and stated that there hospital doesn't have a neuro on call.I politely told him to call my neuro and wake his arrss up and I wasn't leaving until some sort of treatment was provided.
They gave me demerol for the pain said it should last 12 hours and they started solu-medrol but they can only give it at 500mgs intervals do to it causes to many reactions at a 1000mgs.So I have to go back tomorrow morning for the next dose.I gotta call my neuro's office and figure out if they are gonna have home health come in after that.There ain't no way I'm gonna go back and forth every 12 hours at 11 am and 11pm.
For the court I can't go with the IV's in and I have to watch who I'm around so I don't catch anything they have.So I'll call the courts tomorrow and hopefully they will endulge me.ER doc wrote limitations and it states no court as that can send this attack overboard.
The ER doc did flat out tell my neuro that I had severe right side weakness and visual loss and medical treatment was a neccessity.
So for now this is where I'm at.I'm extremely tired so off to bed I go.
I have faith as this will pass soon.just another day with MS.It may attempt to rob me of my legs but I'm giving it a fight.Even though the legs don't wanna function I still go to the fitness center every morning and work these legs out.Trying to keep one step a head of it.
Heck I'm all ready disabled from 2 back surgeries when I was 33.The MS is just an added bonus.
theres nothing to fear but fear its self.
When life gives ya lemons ya just make lemonade.
My faith,my family and my friends get me through it with there love and laughter.Thats the best medicine of all.
Ya gotta look at things in a positive manner,whats gonna be is gonna be,I except that and push forward.
Hi sweetie, I'm so proud of you for the way you are handling everything. You deserve some kind of MS award. Do they give those? What's gonna get you through this is your attitude and yours is at a 10 plus. That's very important. You gotta be tough and don't ever give in to this disease. I know we can't beat it but we can learn to live with it so that we get the better end of the deal. I can tell your a fighter just by going and doing your workouts every morning. Trust me I know how hard that is. Going to PT 3 times a week feels like sometimes it's kick'en my butt, but I wont let that happen just like I know you wont either.
Right now your being my hero and I couldn't be prouder of you. Especially for the way you stood up to that idiot neuro assistant. What a be-I. Hang in their darlin cause its a gonna work out, and you know you got all of us.
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
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.
I'd go if I good move,but I ain't giving into these Drs.They are gonna listen!!!!!!!!
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.
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!
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
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.
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.
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.
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.
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)
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! :)
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.
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.
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.
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.
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