All Done and Home!! Looking for infections in LP anyone?

[uk2]

HI Everyone

Hope you all well.

I had my LP and EMG/NCS on wednesday at the neuroscience ward in london, i was hoping as being a really good hospital and a teaching one with all the latest tec that they would be doing the LP by floscopy (dont think im saying that right with the camera so they can see where they are going) but they didnt i waited till 2.15pm to get my EMG (i had been told to get there at 11.45am)
I had the pad thing on which do the shock thing and they were only going to test my leg but i told them i get nerve pain all over and showed them but they still only tested my arms and legs i wanted them to test my top leg by my pelvis but i dont really know where all the nerve lies. I thought i was having the muscle testing too and asked the nurse when i came back up she said i was to have a emg and that the ncs is the same as the emg i dont know is it? ( by the way they didnt hurt at all)

I then had my LP at 3pm i was very nervous and was hoping for my consultant but i got his juniour assitant and as usual as with the spinal blocks it took him three attempts three lots of local injections different postions he kept dropping things!! but he got it in the end (i just kept saying the lords prayer over and over in my head) and griped my husband hand like i was in child birth LOL but it was ok i guess. lay flat for two hours afterwards then allowed to go home.

The odd thing was that he asked me if my consulstant was happy to do the LP before the pelvic MRI cant understand why he asked that?

He took 4 tubes of fluid off is that normal? when i asked him what they have asked to look for he said one disorder i could not hear beging with m and he said the others were for infections, he said the results could take up to 6 weeks for the results!!

I was in agony that night through my back at the site and all around lots of nerve pain i could not sleep that night due to my hip pain too as my back is the only place i can sleep on as my hips hurt too much, i rested all day yesterday got stuck in the bath last night to be rescued by my husband LOL im still stiff today and in pain with my back and feel flu like but its not as bad as i thought. I still cant bend down and cant drive but he did have a good poke about before he got it right but i dont remember after my spinal block being this in pain but i guess i had the c-section pain to worry about then lol

Any idea what infections they could be looking for? and the disorder with m could be? he was asian and i could not hear him well.

Samantha x

[uk2]

I guess they still could be looking for that, and they did the blood thing to match with the LP like swolle said so maybe it was, i cant think what infections must effect the CNS they never really say much do they.

Thanks

[papo]

I THINK THE M WORD WAS MULTIPLE SCLEROSIS...

[uk2]

Never got it hun!!  oh well hope it cheered someone else up LOl all home phones can do it i think its funny i only found it out as i texted a home phone number instead of a mobile and the person told me about it lol.

well you have my mobile number so just text anytime you want. hope your well love sam x

[EL18]

HI Sam,

I did your home text, found it a few days later, didn't even know my phone could do that. I texted you back from my mobile...?  Did you get it?  If not some one else did...opps!

Em x

[uk2]

swolle

Hi yes they took blood from me at the same time they could not get it from the arm so got it from my hand, i wondered what it was for he muttered something he was so busy i should of been seen at 11.45 for the nerve tests and 1.15pm for the LP but i was seen at 2.15pm for the nerve test and 3pm for the LP alot of waiting around its taken me agaes to feel right again but pushed past it and been ok.

Although the hospital is a wonderfull one and a private patient oposite me was getting a very in depth procdure with contrast and moving pictures and he got it all on cd but being NHS the only time i saw my notes was when i was asked to carry them down to the EMG place which was on a different ward then the LP. I wanted to look but they knew i was coming down with them, if there had been noone in the lift i would had had them out and looked at them.

i never get a copy of the blood reports its always sent to the consultant and they tell you nothing!!

i didnt realise you had to rest so much!! i rested thursday all day in bed but friday i went out and about in the car which was painfull i didnt drive my husband did and today i went out for a couple of hours but felt really ill, i feel all hot and cold flu like and a pressure in my head so i came home and have been resting for most of the afternoon, i guess i just over done it i only used my crutches to get to the photo booth as i wanted to get my passport photo for my disabled badge.

Heather

Thanks heather, been over doing it abit though but not bending or lifting but feel really ill today but its been three days i feel flu like and a pressure headache but i think iv just over done it.
Iv decided not to worry what it is so much any more, im trying to make my life more comfortable while they find the answers like sticks and wheelchairs and get the O.T in for a assement and iv applied for disabled badge and disability living allowance at the lower rate, its going to be a long wait till i find out and its no point struggling on with out some form of help money wise and practical help.

EM

Thanks hun, all over feel better one more MRI to go and maybe there will be some answers there maybe not but like i said to heather in the mean time im making my life more comfortable like wheelchairs better sticks to get around and a blue badge and other benefits to help me practically as it no good just waiting to get better which i guess i have been its better just to except i guess and that helps a little i still have faith there find what it is and hopefully get the treatment i need but iv gone past the kidding myself stage this will just go way cause it wont not for now anyway!!

Hope your well, i did home text you but i dont think you got it! i read your post about one step forward one step back and really felt for you this illness whatever it is can be so cruel like that it gives you false hope.

Lots of love sam x

[EL18]

Hi Sam, now you can take a deep breath and breeth a shy of relief....it's all over. Well done...proud of you.

You must take it easy for the next few days though.....aunty em says so.

I think it took about 4 weeks to get some of the rsults back from the lp but I know the O-Bands bit takes a lot longer.  

Really glad you are ok....really proud of you.

Loads of love as always...Em x

[Heather3418]

Oh god sweet dear...you did it.  It's all over.  I have been on the edge of my seat, waiting for a post from you to let us know how it all turned out.

I am so glad that you are alright.  I too, had an intern do my LP and he was lousy at doing it.  Fumbling around...idiot.  Then the flouroscopy...lucky me.

Honey, I am glad that you are okay.  They test the fluid for infections, no matter what you are having the LP for.  Not to worry.  Get plenty of rest, no lifting or straining for a few days.

I am so proud of you, Sam.  So proud.

Heather

[sllowe]

Hi Sam,

Whew - you did it! But, I'm sorry to hear about all those attempts, you must be sore, and I hope your feel well soon.
Did they draw blood too at the time of the LP? They would use this to compare the Spinal Fluid to the Serum and look for Oligocolonal (I know I spelled that wrong) Banding, which when present, suggests a demylenating disease is possible.  

When it is not in the serum, but present in the fluid, they can suggest that it's of CNS origin.  I'm not sure what was written up for them to look for with you, but I hope it's everything you'll need, because of course, it's not something you'd want to repeat.  Stay on top of the report and ask for a copy.  Be  sure that you see those results (when they are in) and they should comment on spinal fluid and serum (among other things).

The reason I am  mentioning this is because of my experience.  The serum was taken, but never analyzed and compared to the fluid.  It ended up being an ongoing issue at the hospital, which I would of never of thought would happen at a University based hospital. So, you just never know.  Had I not read the report, I would not of questioned the Drs.  It specifically said, Olig. banding present, however, no serum available to confirm it's of CNS origin.  After I saw that, I thought. . .hey, they drew blood? Why is there nothing to report on?   From there, I did my research and called them all on it.  So, long story semi-short.  Read those lab reports!

Lastly, please rest a lot the next few days, I'd hate to hear you getting the leak and the accompanying headache.

ttys,
SL