Behcet's Syndrome Society
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All I want to do is cry!!!

Two weeks ago I had a Lumbar Puncture and have had the time from hell since.

The actual procedure went ok the Doctor and nurses were wonderful at putting me at my ease..could easily fallen for the Doctor!!

The aftermath has been horrendous...

The hospital is an hours drive from home, so having been told to lie flat on my back for at least 24 hours I had to sit for that long only a few hours after it was done. That was the start of the pain in the head, I had been fine until then..

Went straight up the stairs when i got home and flat on my back and there I stayed only moving to go to the loo and even then I had to wait until I really really had to go before I could manage to get myself there and it is only outside my bedroom door!! The pain was unbearable, I actually though I was going to die at one point.

I rang my GP who told me lie flat on your back and drink load of caffeine...I obeyed and no improvement...11 days later and I can get up for more than a few mins yeepee! This Sunday I was able to sit up for most of the day and yesterday I actually got up and drove the 3 miles to take my son to school RESULT.

In the midst of all my woes we too had a budget here in Ireland and I am now officially screwed.....and to add insult to injury my child benefit has been stopped because of some form that they did not received (I had in fact send them the same form 3 time!!) So today I thought I was clear headed enough to tackle that particular problem otherwise there will be no Santa in this house this year and Christmas may be in a black out too!!

Guess what I was told by the wonderful lady in the Child Benefit Dept "Ah well in may be out to you before Christmas and it may not deal with it you are not the only person affected"

Oh the joys of the season of good will lol

Have a rheumatology apt tomorrow 2 hour drive to that hospital so who is betting the head will be throbbing by the time i get there and have to sit hours waiting to be seen? Hopefully at least I will get the results of LP and see where we go from there..

Rant over. Thanks for listening!

11 Replies

Hugs my darling - lots of hugs and lots of love xxxxxxxxxxx


Ruth me lovely

That is a lot to cope with all at once and deserving of a rant (((hugs))) xxx


Definitely... Rant away and big hugs :) xx


Let it all out!!





hugs x x x

i had an lp wen i was about 24 wasnt god had to try 7 times to find an insertable spot due to a badly positioned tattoo- they cnt go thru tats. x


Oh ruth

I don't blame you for ranting and I bet this is probably not the half of it.

My stress levels have been going through the roof lately as well and I have been shouting at everyone...not my nature at all really.

The Lumber Puncture sounds pretty awful and I had a similar reaction when I had one many many years ago. But have had others since and it didn't happen again, so hopefully you won't have to have another one again. But if you do it won't necesarrily happen evry time....sorry probably no consolation at this time.

Do your specialists who ordered the test know this has happened? You can tell them at your appointment tomorrow...I hope someone is going with you as the travelling seems a lot with the way you are feeling....I hope it goes well and I will be thinking of you during the day.

Silly advice at this time of year, but only choose to do what really is necesary...I have to do this when things come on top for me.

Good luck and take care



Ruth I'm sorry you have had such a crappy few weeks :-(

Guys...sorry to show my ignorance but why is a spinal tap done with Behcet's?

Is it to rule out other stuff?

Love Jill


Hi Jill

To see if somebody has neurobehcets or another reason for neurological symptoms.

There is a link to the Behcets Society website for fact sheets

Look for the link to "Neurological and Psychiatric disorders in behcets syndrome" this will explain

Hope this helps



Bless you, keep your chin up. Hugs C xx


Oh my poor dear!

We are thinking and praying for you. Everything has been raging against you, I hope things improve soon,

Hugs and beat wishes x


ruth my best to you and your sorry you are feeling so awful right now and all you are going thru...

jill thanks for asking about the reason for a lumbar puncture as i was unsure myself.

andrea, thanks for the answer to where to fiind the info on lumbar puncture, thus far i have not had to have one...



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