Round 2

[Hope38]

Well only had to wait an hour and half this time at the Pain Management Office!  He didn't tell me much about my spine.  I told him what the brain MRI said and he said your to young to have white matter disease or any lesions.  Said smoking does not cause those.

He wants me to see another Neurologist, he also wants me to send him a copy of the Brain MRI report.  I told him Im doctor'd out.  I asked him if I could wait until my next appt and after he reads the report before I go skipping off to another Neurologist and he said it could wait.  He thinks it sounds MSy to him.  Good lord I thought I was out of the wood work with this MS stuff.

I feel like Im on a Merry Go Round
Lisa

[T-lynn]

Your pain management Dr seems to be a gem and educated.That sounds like reassurrances for you.

He knows your to young for white spots and smoking don't cause the lesions.

Hope, I have lots of days I can't do simple things.I try to push through it even if its half done.I've had dumb founded moments to where I couldn't remember how to fold a t-shirt.Mopping floors just whip me.My main frustration is climbing stairs.Lord knows what my upstairs looks like!!!!! 2 teenagers.

I do what I can on days I can do them.In the last month I have slept more than I have been a wake and now dealing with ON and double vision.

Its really hard to put on a happy face for the kids before they get home from school some days.Right now I have entered my hectic time of year,school, 2 in 2 different sports,my son works,so I don't get much help.

I'd like to know who put me on this darn merry-go-round,Quix I also want a refund,I'd settle with a couple months repreive.

[Hope38]

Hi Samantha,

I will keep you in my prayers.  Hopefully they will be able to tell you something.  Nothing worse than for the MRI to actually show stuff (like mine) and be told your fine stop smoking!!!  You might as well tell me I'm crazy and I'm doing this to myself.

Don't be nervous.  No matter the outcome we will all be here for you tomorrow.

This place has been a god send for me too.  Hubby tries really hard to understand, but unless your going thru this yourself you can never TRULY understand.

Lisa

[uk2]

doni

that is so true we all have each other, some days i feel so alone with this that not even my friends or family understand me but then i come on herer and realise how many of us are out there. Thank God for this site.

Hope

im so glad im not the only one that breaks down in front of the kids i normanly keep it together (well almost ) but coming up to tomorrow and getting them sorted for start of school plus the increasing debt building up due to me being off sick!! ( illness effects so many parts of your life) i just lost the plot!!

Please keep me in your thoughts or prayers (if you believe) tomorrow morning when i go and get my MRI results im so nervous!!!

God Bless and thank you all so much for listening

Samantha x

[doni54]

I know what you mean about the crying, Hope.  I really work at trying to be positive, when I wake up every morning I tell myself I'm going to have a great day.  Then I get out of bed and can't walk or feel like I haven't just awaken, but that I have been up for days.

Somedays when I read these posts I will just sit and cry.  That makes me even more depressed cause I can't pull myself up out of this.

I truly believe that all of us here have a strong connection and that having each other to talk to is a God Send.  This forum,and all the wonderful people on it, can keep us all up and running - we might be slow, twitchy, _itchy, and off in la-la land, but we are doing it together! he-he!!!!!

I guess if we are all crazy it is nice to know we have company.

Love to all of you
Doni

[Hope38]

I understand about not being able to do simple chores.  At the pain management it wanted to know the 3 main things you would like to do in your day that your unable to right now......I listed, Cooking/Cleaning/Playing with kids!  Everyone should be able to do those 3 simple things but when I'm in a flare I cannot!

Oh the crying.....yes my kids have seen mommy have breakdowns.  I can only stay positive for so long then the mental breakdown happens!!!  Its no fun for us or them :(

I know they all seem to think we are crazy or want attention....ummm that couldnt be furthest from the truth.  

No need to apologize for venting we all need to do this.

Lisa

[uk2]

It is a lovely picture you have created saying about the merry go round lol thought id never ask to get off a ride but i am now!!

Im on 375mg of lyrica now and i feel iv reached a copeable level of pain (but not when im in a flare) thats only cause i stay at home if i go out i cant walk far at all without pain though i am managing without crutches now!!

my three kids and the house is all i can manage at the moment (and in flare times i cant do that) i cant ever see me going back to work and doing a 30 hour week again.

I go and get my results tomorrow of the MRI im so nervous i want there to be something on there that they can just say "this is what is there is a pill and off you go" but i know that is not what will happen.
i just want some answers!! i was crying most of the day yesterday (my kids thought i had gone mad)  im tying myself up in knots here and if they just tell me there is nothing wrong i will be heartbroken cause there is something wrong!!

Sorry for venting

P.s i saw the bouncey one first!! ill give it back when you wake up lol

God Bless

Samantha

[Hope38]

Uk2........I was DX'd with Fibro, but the Neuro doesn't believe in it....lol  I just came out and asked to be refered.....I don't think you have to have a DX, I think you just have to be in pain.  That Lyrica knocked me for a real loop......I HATE the way it made me feel :(  My kids are so glad Im off that medication.

Oh I don't like the Merry Go Round ride, I get dizzy easily!!!  So I KNOW I wouldn't have bought a ticket for this blasted ride! lol

floridamom......I'm glad to be back in the forum (for the people ONLY)!!!!  I need the horsey that goes up and down to break up the circling.....so I have dibs on the bouncy one!!! lol

Ok, gotta lay down for a bit......No fighting on the ride while Im gone!

Lisa

[doni54]

WOW  Kristin, what a visual! ha ha  You just made my day, I so much love your sense of humor!

When my twitching and shaking takes over again I will remember this visual image and get a great he he.  I am sure it will help keep my spirits up, thanks!

Lisa, I hope you get some answers soon, and hope you are feeling better.  We are all glad you found you're way to this forum.

Best to all
Doni

[uk2]

Sorry lyrica did not suit you well.Its a hard drug to get on with it made me feel so odd in the begining but that has eased now it does not really control the flares when i get them (though saying that i dont really know how bad the flare would be without it altogether.) I had mild sx since the birth of my child my 2nd child in 2000 but the worst flare was in May this year when i could not even move walk or eat through nerve and muscle spasms but lyrica eased that alot.

I pray you get some answers soon.

My doctor wont refer me till she has seen my MRI report.
Does the pain managment people dx you? or do you have to be dx to go to them? or can you not be dx and go there on referal of your doctor if all that makes sense!!

Sorry to keep asking theses questions

God Bless

[floridamom2]

I want the horsie with the pink ribbon!!!  Welcome back to the carouse Lisal!  I am sorry for you that you are back but we do enjoy your company!!  

I am glad your pain management doctor is taking this all seriously - or at  least when he read your report he was.  I wish there were easier answers for all of us here on the merry go round to help us get out of limbo land and into a place where there are real answers and diagnoses and treatments.  Until then I will sit on my horsie with the pink ribbons and shake and twitch and be happy I get to sit down.

Take care all!
Kristin

[Hope38]

Thanks, I wasn't sure if it was lesions or not.  My pain management dr asked me that.....I said I THINK they are lesions.  He was like WHAT you have brain lesions and this Neuro dismissed you!

I just wanted to make sure so my Pain management dr freaks out for the right reasons lol

Lisa

[burbanchick]

Sorry, I'm not Quix, but I will try to answer your above question...And allow Quix to award me with a cookie if I am right!

The term "foci" would refer to an area of interest or "focus."  If they referenced 3 or several or whatever, they are referring to spots/lesions or areas of abnormal signal.  They may or may not refer to them as lesions until a diagnosis is made.  My favorite is when they call it a UBO, unidentifiable bright object.  

Hope that helps!
~Burban-C

[Hope38]

I have no memory of a contract!  We need lawyers I tell ya!

Uk2

Tramadol is working some, luckily I have the back up Vicodin ES.  When I went to Wacko Neuro #1 I asked him if he knew a good pain management Dr.  Here you have to be referred to one.....so I told them he referred me lol!

He wasn't working to well the month of August......my flare was so bad I was on the phone with his office lady every day.  She tried emailing him and leaving him notes and he NEVER got back to me.
So this visit I made sure I got what I needed incase of another flare and not being able to get in touch with him.

The side effects of the Lyrica were'nt good on me.....I felt spaced out and on drugs while on it, I had to come off of it, due to the insurance company denying me.  Luckily I was only on it for a short time.  My head is finally coming out of the drug induced fog!

Quix

I know you answered this already but I have totally forgotten (sorry) what exactly does "foci" mean on a brain MRI?  That mean i had 3 spots or 3 lesions..........I'm confused again lol  

Lisa

[uk2]

Hi lisa

Sorry you going down this road again its seems a never ending one for us all!!  I too get that burning feeling in my muscles and im sorry you have this at the moment.
Iv found lyrica helpfull im on 375mg its stopped my lessened my burning and pins and needles has not worked on all my nerve pain and does nothing really for the muscle pain i get but it has lessened the other sx.
Im glad your doctor at the pain clinic is helping i really want to go to a pain mangement clinic but my GP want s me to wait till i get my results from my MRI this wednesday ( so nervous).
How did you get to a pain clinic? though i guess it works different here in the UK.

God Bless and Good Luck with the new neuro when you find one.

Samantha

[grannyhotwheels]

I was wondering how the tramadol was doing for you.  It never worked for me but I hope you have better luck.   Also,  I'm sorry about the pain your having to deal with.  That's the worst part.  I know that burning feeling well.

By the way Quix, I don't think I did sign a contract.  But who knows if the salesman was a hottie I would have signed anything, and we all know how are memory is with MS.  We would'nt remember if we had signed anything or not.lol

I'll be praying,
Carol

[Quixotic1]

I'm also ready to send this disease back.  I want a refund!  can't remember why I signed up for it in the first place.....maybe the salesman was a hottie....Did any of you sign a contract?

Lisa - I glad you found a neuro that isn't willing to ignore what you're going through just because you smoke.  That guy would let someone die!  Sorry you're back on the carousel with us.  We'll keep you company, but the up and down of it all makes me dizzy.

I think your taking a little break until the new neuro reads, not only the report, but the films himself, is a great idea.  It's been a couple days, hows the Tramadol doing?

Quix

[Hope38]

Hi Pat.........yes he gave me a script for Tramadol......but incase this doesn't work on me he gave me a script for vicodin.  Since he's pain management I have to go every month, no refills.  I'm praying the Tramadol will work ( I hear if it does work it works really well...if it doesn't then its like a sugar pill).

I was ready to leave the MS problem behind me and look into another Neurologist like maybe a few years down the road, but seems I must do it sooner than planned.

Lisa

[6-paq]

Oh boy, this ride sure does stink!! :(

I'm sorry you feel like a ping-pong ball and that you are in so much pain.  Are you getting any meds for your symptoms?

Hope your ride stops soon!!

Take care and many prayers for you!
Pat :)

[Hope38]

I don't remember buying the tickets for this ride though.

All of my muscles feel like they are on fire, this has been happening since the beginning of this month.  Yes, I do have symptoms along with the lesions.

Im just hoping this Neuro doesn't have a "god" complex and isn't as dismissive.

Thank you for the prayers, I keep all of you in my prayers every night.

Lisa

[grannyhotwheels]

I think that we are all on that Merry Go Round, Lisa.  I sure wish that whoever is pushing it would stop.  I'm sorry you have to go through all of this I know how hard it is.  Are you having MS like symptoms besides just the white matter or lesions.  Are you in alot of pain?  I sure hope not.  

Hang in there and remember that we are all here for you.  All you gotta do is let us know.  Take care and keep praying.

I'll be praying,
Carol