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Tania B

New and not fully diagnosed

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Tania B

Hello,

 

I saw a neurologist just a few days ago who wants me to have a lumbar puncture and has taken blood samples. I was referred to him by a balance consultant (neuro-otologist) who seemed think my imbalance was migraine related. I have other symptoms which match up with MS. I'm shocked and scared right now.

 

Can anyone tell me what to expect with the LP?

 

Tania

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Michelle

Hi Tania and Welcome,

 

It would be easy of me to say not to be scared. But I'm sure most of us here were a little scared,if not nervous when it came to our LP's. I am going to put a few links for you to look at first,but please remember it's a mixed bag when it comes to Lumbar Punctures.

 

http://www.mstrust.org.uk/information/aboutms/diagnosing.jsp

 

http://ms-people.com/forum/index.php?showtopic=6827

 

 

Michelle :hearts_circle:

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Tania B

Thank you so much for replying Michelle. I think that forewarned will be forarmed.

 

Tania

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Christina

Hi Tania

 

I too have constant balance problems which were originally diagnosed as being an inner ear problem. I also have a migraine element supposedly. However, I only got the definite MS diagnosis this year after some scary numbness and loss of function in feet and legs. Before this, no-one even considered MS but it probably was all along. I was lucky not to have the LP (I actually told them I wasn't keen to have one), my MS was diagnosed by MRI and blood tests only. I know, when I worked in hospital, on a neuro ward we used to do them fairly often. The ppl who do them these days are usually very practised at them. You'll get a local anaesthetic and you'll lie on your right side, afterwards you may be asked to lie flat for a few hours to avoid a headache.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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linds

Welcome from me too lindsx


Lindsx

 

 

 

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-Kaz-

Hi Tania and welcome to the forum, i'm fairly new here too.

 

The second link that Michelle provided is useful info about LP's, bear in mind that everyone's different, we don't all react the same and that's why we can have differing experiences of procedures but at least you get an idea of what can happen.

Personally my LP went ok, the usual on your side, curling into a ball and remaining very still while it's being done, felt weird but not horrible.

I had to stay in overnight due to the time of day it was done, (early evening by the time the doctor eventually came). Wasn't allowed to get out of bed until morning after, which made needing the loo interesting! All of this was 10 years ago so things may have changed a bit now.

No bad headaches but i got plenty of rest after so maybe that's a factor.

 

Good luck! :cheerleader:


Keep smiling :-)

 

Kaz

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mj2000uk

Hi Tania

 

Hi to you, hope I can offer you some light here!!!

 

No one, and I mean no one has more of a fear of needles and injections than I do. I challenge anyone to make more of a kerfuffle of it than me so when I heard I was having an LP, it was like you had just told me that Everton had won the Premiership. I was a mess.

 

The fact is though, it wasnt so bad. Like with many things, the thought is a lot worse than the actual event and I would urge you just to concentrate your mind elsewhere unitl the day and then get it over with.

 

Following on from there though, drink plenty of water before and plenty afterwards and try and remain in a horizontal position for as long as you can. I had to remain in bed for 5 days afterwards as I had huge headaches when I went vertical for anything. In my case, I dont think they stressed the water thing enough to me!!! But again, as with all things, the feeling passes and apart from being on my back for 5 days, there was no pain in the LP and its not something to be concerned with.

 

That was 3 years ago, on from there, my own report was that my LP was consistant with MS but because I have never had symptoms close enough to each other to get a DX I am still in limbo and supposedly MS free until things change.

 

Good luck to you, whatever the outcome, there are plenty of friends on here that have the right words at the right time and so its a good place to be!!! I can vouch for it!!!

 

Take care

 

Mike

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clare

hi and welcome

 

good luck with your test results :cheerleader:

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Hezza

Hi Tania and :welcome3: from me too.

There's nothing I can add to the advice you've been given as I was lucky enough not to need an LP myself.

 

Take care :cheerleader:


Life is short. Eat dessert first. Jacques Torres

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Tania B

Thanks everyone for your lovely welcome messages and advice given from personal experience. Now I know what kind of things to expect and I don't feel so alone. The questions just keep queing up in my head though.

 

Wishing you all well,

 

Tania

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anna derbyshire

Hello Tania,

 

huge warm welcomes from me too! :cheerleader:

 

I'm a little later than everyone else, you probably feel settled in and at home on this site by now!! :welcome3:

 

hope to speak to you some more

 

Anna x


Anna x

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-Kaz-
Now I know what kind of things to expect and I don't feel so alone. The questions just keep queing up in my head though.

 

 

If the questions just keep queuing up in your head Tania then keep asking them on here! Everyone's really friendly in helping newbies (me included) with whatever questions/worries you have.

 

Only wish i could have found something like this forum when i was newly diagnosed, it's very helpful and supportive. :cheerleader:

Ask and you shall hopefully have answers!! :welcome3:


Keep smiling :-)

 

Kaz

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gillshutt

Hi and welcome to the forum. I had a LP a couple of years ago and it was ok although I couldn't curl up on my side far enough and had to sit up and bend over forwards which caused me to go light headed because of the OA in my neck.

 

The worst part I found was afterwards when I felt like I had been kicked by a horse.. I have fibro as well so any pain is amplified. Oh and I was swabbed down woth iodine and my knickers stuck to my back afterwards :shithappens: so not this seasons look :lol4:


Why me?

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Dianni

Hi and a warm :shithappens: to the forum!

 

I too was terrified when I found out I needed a LP earlier this year. I took the advice offered here and came out the other side none the worse for the experience! I drank loads of diet cola (2ltrs) in the two hours after the test. I laid completely flat and avoided the dreaded headache. My back felt a bit bruised for a few days after and I was very kind to myself, resting as much as I possibly could.

 

Please keep posting any questions. I'm sure your head must be spinning!

 

Make yourself comfy and have a look around the forum. There's loads of info and help here.

 

Good luck with the tests

 

Hugs

Di

xxx

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tdkstratus

Hello there!

 

I had my LP just last month (still waiting for results). Luckily for me I had a really understanding neuro who made sure I was calm. I'm not scared of needles but when I can't see what's happening I do start to worry. What he did with me was ask me to lay on my left side and raise my legs so that my back was curved. He pressed on my spine to find a spot for the needle to go (wasn't the most comfortable). He then put iodine on the skin and then gave me anaesthetic. I jerked with the first needle cause I wasn't expecting it but after that I was fine ( I think I had about 5 to completely numb the area). I didn't feel the LP after that however I did kick a cabinet when he hit a nerve by accident (wasn't funny at the time but seems funny now). Because I didn't feel anything I was able to chat happily to the neuro and ask questions.

 

I did get a funny sensation going down my back. It was like a wave going down. When I asked about it he said it was good as it meant that the fluid is going down so that they can take the samples. My back did hurt for a couple of days afterwards but I didn't have a headache and I was back to work the next day.

 

The only advise I can give is that if you feel in any way anxious or unsure ask a load of questions. I'm sure they wouldn't mind as they would want you to feel as relaxed as possible as it would take no time at all.

 

Good luck


Terri

 

Ohana - Where nobody gets left behind or forgotten

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Tania B
The only advise I can give is that if you feel in any way anxious or unsure ask a load of questions. I'm sure they wouldn't mind as they would want you to feel as relaxed as possible as it would take no time at all.

 

Good luck

 

Thank you for your advice and your clear account of your recent experience. I was told nothing and still don't know when my LP will be so real information from someone who knows is invaluable.

 

Wishing you well

 

Tania

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Michelle

When you get your appointment through, it should come with an advice sheet. The accounts on the forum are very comprehensive,and you would do well to heed the advice about resting and drinking copious amounts of fluid.

 

Michelle :shithappens:

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Tania B
When you get your appointment through, it should come with an advice sheet. The accounts on the forum are very comprehensive,and you would do well to heed the advice about resting and drinking copious amounts of fluid.

 

Michelle :shithappens:

 

Thank you this is sound advice and I'm sure it will help.

 

Regards

 

Tania

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tdkstratus
Thank you for your advice and your clear account of your recent experience. I was told nothing and still don't know when my LP will be so real information from someone who knows is invaluable.

 

Wishing you well

 

Tania

 

The funny thing is that I was in the exact same position as you are in now. I was told that there was a 12 week waiting list for neuro. It was only because I had a routine appointment with the eye clinic that the specialist there noticed my walking (stumbling I would've called it) and arranged for a neuro to see me the next day. Even then I didn't know what would be happening. I was told in the morning that they would need to do the LP and he did it just after lunchtime. Although I will admit he did talk me through the procedure in the morning and again while he was doing it. I hope he's my regular neuro I liked him (got to go back on 7th Sept) :shithappens:


Terri

 

Ohana - Where nobody gets left behind or forgotten

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Tania B
The funny thing is that I was in the exact same position as you are in now. I was told that there was a 12 week waiting list for neuro. It was only because I had a routine appointment with the eye clinic that the specialist there noticed my walking (stumbling I would've called it) and arranged for a neuro to see me the next day. Even then I didn't know what would be happening. I was told in the morning that they would need to do the LP and he did it just after lunchtime. Although I will admit he did talk me through the procedure in the morning and again while he was doing it. I hope he's my regular neuro I liked him (got to go back on 7th Sept) :sheeplook:

 

Terri,

 

Good luck for when you see your neuro again. I've got to wait until November to see mine again. He asked me if I wanted to see a nurse, allowing for the fact my diagnosis is not confirmed, but again I left without an appointment to see one. The more I've been reading the worse my case seems. The onset is later than typical with no clearly defined attacks. I'm starting to think that the anxiety is causing some problems though. I'm going through the denial then anger stage then just plain fear with just a sprinkling of hope.

 

Wishing you well.

 

Tania

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Christina

Tania

 

I would recommend seeing an MS nurse if you can - have they given you a number to contact them? They generally have a bit more time to chat about symptoms, worries etc than the neuros do and are pretty knowledgeable about MS. I have two I can contact and one I favour more than the other. She is very easy to say things too - even silly worries. We have an MS helpline here where you can ring and leave a message for the nurse to ring you back. They always do, so I'm pleased with that. Also mine will ask my neuro a question if they're not sure what's going on with me, like when I was having major side effects from Avonex injections and through my nurse, I managed to get neuro to agree to half dose. So all in all they are an important liaison with your neurologist, who let's face it, will probably only see you a couple of times a year if you're lucky!

 

Chris


Not waiting for the storm to pass, but learning to dance in the rain ....

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Hezza

Hi Tania,

I echo Christina's advice - if you can get an MS nurse then do.

For me my Nurse is the first point of contact for any queries and she is worth her weight in gold. Like Christina I am able to get in contact with my nurse anytime I need to. Often we simply exchange text messages and but she will call me back if necessary.

I only see my Neuro once a year - there's really no need for me to see him more frequently than that. However, because of my medication, I see my nurse every 3 months and it is her who often recommends me to clinics or recommends medication and liaises with my GP to get prescriptions raised.

 

Take care :sheeplook:


Life is short. Eat dessert first. Jacques Torres

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Tania B
Tania

 

I would recommend seeing an MS nurse if you can - have they given you a number to contact them? ....

 

Chris

 

Chris,

 

The neurologist asked me if I wanted to see a nurse and I said yes. When my appointment was over nothing was arranged. I was told to have blood taken (without an explanation) and told to go to radiology with a piece pf paper for the LP. My appointment was a week ago and there's been silence. I'm wondering about phoning the neurologist's secretary. I was not given a contact number. I've loads of questions.

 

Thanks for your advice.

 

Tania

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Christina

Definitely ring neuro's secretary and ask for details of how to contact MS nurses. I wasn't given an appt with them when I was discharged from hospital - just told there was a helpline number, (which I found myself online) and I rang them, explained I'd been given a probable MS dx and had a chat about all the worries and questions going round in my brain.

 

Sounds like you could do with some more support at the moment Tania, so try and find out today.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Sluggish
Marina

If you get no joy from any MS nurse or neuro or whoever and if you'd like some support, you could perhaps try the helplines for the MS Trust, MS Society and MSRC?

 

MS Trust Information Service: 01462 476 700 (not sure if it's a "helpline" as such)

 

MS Society Helpline: 0808 800 8000

 

MSRC 24 Hour Telephone Counselling Service: 0800 783 0518 (then press 1)


Marina

(belated DX in June '05, SPMS)

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