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Please NO lumbar puncture :(

Hi,

Ive been ill on and off for around 5 years now, nearly lost a previous job due to frequent sick leave.
Symptoms are: Fatigue (ALOT!) Dizzyness - sometimes so bad I cant stand and vomitting, generally just feeling unwell all of the time and most recently loosing sensation and a very ‘heavy’ right hand arm and leg.

Im sick of being told its just a virus or depression!

Finally 2 weeks ago when I lost the feeling in my side (my family thought I was having a stoke!) I got admitted to hospital and sent for an MRI. Yesterday I got the results from my Dr - Inflamatory changes in several spots in my brain that arnt typical MS but can be connected to it so its either, still a virus! or with further investigation maybe MS.

In the meantime ive been off work 4 weeks and just given another 6 (and I wont get paid?!)
and now being referrred to a Neurologist and she said they will probably repeat the MRI to see if theres any changes and do a Lumbar Pucture - That TERRIFIES ME! Do you really really have to have one to get a diagnosis?!? I dont mind if it take longer…I just really cant deal with that after the last few months ive had…

BTW im 25.

Any advice please! x

im 27, I was admitted the same as you, my ebrow wouldnt lift on one side of my face, numbness fatigue the lot really. I spent a week in hospital then released for a month then another 2 weeks in hospital. Now im home and after doing the theropy and everything else im still no better so am waiting the results of my most recent MRIs, I now have virtigo which they are waiting to see if it goes with the pills and comes back to if its a new symptom.

As much as I appreciate the last few months have been hard for you, if they need to do a Lumbar Puncture it will help comfirm. Mine was the same inflamtion of the brain, they thought was a one off episode… well it wasnt.

I had 2 lumbar punctures and they are not to be scared about. Yes it does hurt but now how you would expect, they numb the area first with a needle in order for the next needle to go in thats only slightly bigger, If they hit your nerves then its like hitting your funny bone only its not funny. My first one I didnt like, it took longe then they said and I am sure it was a trainee doing it that didnt rreally know what they were doing. The second one I had was a wlak in the park in comparrison, but I asked someone experienced to do it.

Good luck Lolly

I should have mentioned I woke up one day and couldnt walk, that was the admition to

hi,

ive had two lp, and like you i was absolutly terrified at the first one but it was not anywhere near as bad as i expected. for me it was more uncomfortable than painful, i did feel the odd twinge and keeping still curled up was uncomfortable. i know everyone is different but fear of the unknown makes things worse.

hope this helps a little love lorraine x x

Hi, well you can say you dont want to have an LP if you dont want to.

I had 2 and they werent good. But if it helps you get a diagnosis, then it will be worthwhile.

Speak to your neuro about your fears and ask if he thinks it is really necessary.

The next MRI may give enough info for a diagnosis.

luv Pollx

Thanks guys…

I just know from experience, my sister had to have one a few years back and it was awful!!

hopefully i can persuade them to do all other tests first and that will be enough.

Has anyone had any success with treating the dizzyness and ‘feeling out of it’ ? My numb side is almost back to normal now but still just the constant headache… i feel kind of like ive just downed a bottle of wine, only without the fun of actually drinking the wine!

Hi Lolli,

The actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.

It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.

These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.

Which brings me to my second point; if you normally have a headache how will you know the difference?

Unfortunately some Neurological complaints like MS are very difficult to diagnose and symptoms can be very similar. A diagnosis works on the Sherlock Holmes principle; eliminate the obvious and what’s left must be the answer; not a very good way of diagnosing but it’s the best they have at present.

Invariable you upset a Neurologist if you give them ideas; as they know better; so I would ask your GP to get a blood test done for APS antibodies as your headache could be Hughes Syndrome see http://www.ms-uk.org/index.cfm/isitMS

George

Hi Lolli - I was offered LP to assist diagnosis. Had appointment booked - bottled it. Diagnosed anyway from changes to my second MRI. So no you don’t have to have LP to be diagnosed in my experience. Hugs Min xx

Hello,

It only takes ten mins. The lp process does not hurt, just a but strange. I had 2 MrI’s and was only diagnosed after LP. Ms is hard at best to diagnose best to do as many tests they offer you. Im 28

Darren