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New to MS

Hi all. I started having fits about two month ago and was eventually given an MIR (NHS). At the time I was told about some lesions on the brain (I had no clue about MS) and was just told that I’d receive a nerology appointment soon. After a month I still hasn’t heard anything and the (very scary) fitting continued. I decided to go to a private consultation (at the London national nerology hospital) and was diagnosed with epilepsy and ‘probable’ MS. Im now awaiting a second MRI (including the spine thos time) and lumbar puncture with this same consultant but under the NHS. I currently have fuzzy legs and numb feet - which I’d had for a few week prior to this, but put it down to anxiety (which I have). I’ve also been wobbely on my feet and ‘failed’ a few of the physical tests the consultant dis. I’ve tried to stay away from Google but I’m really scared of the lumber puncher and about my consultants being right. What is the puncher really like ? The other question I have is: will the lumber puncher show how long I have had this for and what test informs what type of MS you have. Sorry for the long post !

hi fin

the lumbar puncture is a procedure where they take cerebro spinal fluid from your spine.

you will be given a local anaesthetic.

mine wasn’t painful, just a little uncomfortable.

however i was sick as a dog the day after, my gp said it was a reaction to having my CSF taken.

make sure you have a lot to drink, caffeine drinks help.

take a bottle of coke and a BENDY straw or you’ll end up lieing in a puddle!

the LP shows any evidence of oligoclonal bands.

how long you have had ms will be decided from your history and MRIs.

the type of ms you have is usually assumed to be RRMS but you need to have more than one incidence to provide the multiple part of multiple sclerosis.

carole x

Thank you so much Carole. It really had helped put my mind to rest a little more. Will I be able to walk after the lumbar puncture or will I need to arrange a car home ?

Hi,

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.

If the headache lasts more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a nights sleep; this is rare.

Good luck.

George

I have just haf my Lumbar Puncture and it was fine. No headache just a sore back the day after. Just got to wait for the results now. Good luck!

Thanks all for your advice regarding the LP. Will the hospital give me the opportunity to lay down or will I need to get home to do it ? How long does the LP results take to come back? I hope I don’t need to take more time off work as I’ve just had 28 days off due to the new diagnoses of epilepsy and my gp/work wanting me to get the medication right and not risk (as much as possible) fitting at work. My consultant told me approx 2% for people with MS develop epilepsy associated/caused by the MS. Does anyone have experience word this? Thanks so much for answering my questions

Hi FinHerts The LP in my case was a day addmisson into hospital. After the procedure is done you have to lay flat for two hours Over the next 2 hours you are very gradually sat up. They monitor you very carefully and take your obs constantly. I was addmitted at 9 a.m and left at 4 p.m. This must not be rushed as you can become quite ill. I was sore the following day also. They advised me to rest for a few days. Good luck Regards Kim

I drove myself home after my LP & was at work the next day. Different for everyone.

Thanks both, it seems that the experiance is so different for everyone! You have all been so kind in giving me advice /sharing your experiences. It’s pretty scary isn’t it! I feel like I’m in limbo somewhat. Just left with lots of questions! My legs and inparticular, my feet are numb and fuzzy. It’s driving me insane. My gp said she can’t help as she isn’t a MS specialist… but I have no idea when I will see my consultant next !