Multiple Sclerosis (MS) Support Group

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AusSue 07/30/2008

In the last coupple of weeks I have had a mri with contrast which took 5 attempts to get the canula/needle in for the dye so was black & blue from that. Next day had to have more blodd tests after neurologist visit & took them 2 goes then so hands even more bruised. My veins keep collapsing when they stick a needle in. Next had a lumar puncture.spinal tap & they got me sitting up within 30 mins. Site bled, I have had back pain & migraines/headace for a week, went back & they admitted they had bruised my sine which is why I am so sore & infection in site. No happy at all. Now looks like I got to have endoscopy & gastroscopy as very low in iron & on iron tablets & every time they test it is lower.
I went out last friday night with some girl friends & proceeded to fall asleep, also had a couple of black outs where I just stare & dont know where I am or anything when I come to. Very scary. Was glad friend had picked me up as I wont drive at night as too worried.
Still surviving on pain killers & managing to work 3 days a week but it is making me so tired I am struggling to keep going.
Sorry for typos but having trouble with typing as my fingers are numb on left hand. Pain on left side, hat pains in back, headaches & fatigue & no balance so falling if dont use walker. Cant walk far as I get too tired.
Sorry for rant but I am getting really fed up with the never ending tests & then no answers. I just want my life back.
Very tired & fed up with struggling
Sue

deleted_user 07/30/2008

:( If we lived closer i'd fall asleep while hanging out with you and not walk far at all just to make you feel better. Not that i'd do it on purpose. These things just happen.

A lof of your symptoms as of recently sound exactly what i had been experiencing over the course of weeks since May and what eventually landed me in the hospital on Saturday. Maybe they'll change your medicine too... ?

deleted_user 07/30/2008

Hang in there Sue! I'm thinking about you!

Hey, at least it's winter there. It's 100 degrees Fahrenheit here.

AusSue 07/31/2008

Thanks for your responses. If we lived in the same country it would be great to hang out together. For some reason the ms people I have met off an Aussie board never have the time to catch up (funny about that when we all push ourselves) & a few of them have turned nasty on me & said I am "too high maintenance" as I keep complaining with my struggles. I am so glad I have got you here to chat with (well on here) & read your entries too.
I am glad we are not in summer at the moment as summer here is very hot too. At the moment we have lows of about 3-6'c & high of about 15'c max. Its still dark when I leave home for work (6.45am) & almost dark when I get home at about 5pm, gradually getting longer days so a bit more light. Sorry went off track there.
I hope I hear from my neurologist soon to get an appt to find out what is happening.
Thanks again

GrammieP 07/31/2008

Yikes ... you've had about every uncomfortable test there is. I'm so sorry nothing is going right. I hope you start to feel better. I'll keep you in my thoughts.

hugs, Marti

deleted_user 07/31/2008

I am sorry to hear about your issues. If you want to turn the table and laught at someone else, I am 42 Male and had trouble "peeing". Try having a catheter stuck you know where in a guy and the "nice" (homosexual) male nurse taking a little longer than it should have. I cant say I feel all your pain, but its funny to laugh at things, especially when its someone else!!!! Feel better.

deleted_user 07/31/2008

OMG THEY HAVE PUT U THROUGHT ALOT. THINK OF IT THIS WAY IF ALL GOOD COMES OUT OF THESE TEST, THAT WILL PUT U IN A BETTER MIND SITE. N GIRL I GIVE U ^5 IF THAT WAS ME SOMEONE WOULD HAVE BEEN GETTING AN ASSWHIPING NEW YOKR STYLE (HOPE THAT MAKES U LAUGH). PLEASE KEEP AS POSTED AS U GET UR RESULTS TRY N STAY STRONG U WILL GET BETTER N BETTER DAYS R ON THE ARISEING.

CASMIRA 07/31/2008

one word: attorney...there is negligence here and an attorney would eat this case up!

deleted_user 07/31/2008

those dye injection sites are horrible even when the job is done right!!! i can only imagine what you look like!

i've asked for different nurses because of this very thing...it's such an emotional upset!

for me...started taking salmon oil. it perks up my veins. don't know why...it just does!

good luck...geeeze! what a nightmare!

AusSue 07/31/2008

Thanks for your responses. My back seemed to ease in pain yesterday but today it is back (no pun intended) with full force. Not happy at all as they said it would only hurt for a few days. I am usually very forceful in getting someone to stop but didnt realise how bad she did it, thought she was trying locals. Not bothering to phone them again as I dont want to go into the city today when I am home. Just want to rest.
Will keep you updated.

deleted_user 08/01/2008

Hell Sue, sorry to read what you have been through. What are they trying to prove with the new barrage of tests? Have you not got a firm DX of MS yet?

When I had my LP done it was a piece of cake! I had my GP do it rather than having to go to Melbourne to my Neuro. My GP was so good I really didn't even feel the local go in, but then I figured I must be a bit numb there NOT to feel much.

I did NOT have a headache or anything after mine.

Take care and hope this all sorts out okay.

Hugs
Deb

deleted_user 08/01/2008

GOSH SUE,
DON'T THESE DOCTOR'S KNOW IN THE FIRST PLACE
(OR AT LEAST I CAN'T) THEY CAN'T SCHEDULE SO
MANY THING'S ALL AT ONCE.IT BEAT'S THE CRAP
OUT OF YOU BEFORE YOU EVEN GET THE TEST'S.

I NEVER HEARD OF SITTING UP AFTER A SPINAL.I
EVEN LAYED DOWN IN THE CAR ON THE WAY HOME AND
STAYED HOME THE NEXT DAY LAYING DOWN.

I'M SO SORRY THEY'RE LOADING YOU UP WITH SO
MANY THING'S AND THAN THE BRAIN WORK'S ON
OVERTIME.MORE STRESS.GOOD LUCK TO YOU,HUG'S

AusSue 08/02/2008

Thanks for your responses. I am still struggling with the back pain but my GP said it is not unusual to still be in pain after a lumber puncture.
He wants either the results faxed through to him or new blood tests which will probably be eaiser & depending on the results I may have to have a gastroscopy & endoscopy.
Life goes on.
We are having a nice 3 course meal at home tonight to make us both feel better.
Hugs to all
Sue

deleted_user 08/02/2008

Hi Sue, I am going through the same thing. It is test after test and they still cannot diagnois me. I can barely walk but of course I don't have MS. They said I had an attack of MS. What kind of shit is that. So, I know what you are going through. I feel like I have to be in a wheelchair before they do something.

deleted_user 08/02/2008

sue and maggie,
i'm so sorry you both are going through all
of this.i really hope they let you both know
what's going on with a real dx soon hug's to
both of you

AusSue 08/02/2008

Maggie, sorry you are going through all that & still got no dx.
I was dx in octt 05 but curent neuro wants to check everything out & see if there is anything else happening as I have other symptoms that dont match ms. He is not sure if it is something as well as ms or just something else & wrong dx to start with (took 5 yrs to get ms dx anyway). I think he is clutching at straws as does my GO.
Saw my gp (dr) today & he is getting blood tests as well & will investigate low iron if it has dropped further - that will mean colonoscopy & gastroscopy. - not looking fwd to either of them but if it helps then good.
Still tired & struggling but a bit more coping. Thanks for all your understanding.
Hugs, Sue

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