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Newly diagnosed

Newly diagnosed with ms, seeing my specialist last Nov he 99% said my symptoms and mri results come back consistent of ms just needed 3 other results to rule out anything else. I have just had evoked potentials/ultrasound and due to have lumbar punc Tues. I still think it’s sinking in really as my everyday life apart from fatigue hasn’t really changed. Just finding it bit weird at mo. Any advice. Thankyou

Hi Danny

It’s an odd feeling, you’re diagnosed but essentially don’t feel any different. The time may come when you wail and bemoan your fate, but feeling a bit weird, but generally OK is probably quite normal.

The time may come when you get bloody angry with it. Or feel a bit depressed over it, but you seem to be handling it quite well so far.

I imagine that the LP will put the final piece of the jigsaw together. Or it won’t, if it’s a negative result.

The general advice for having an LP is that you should drink lots of caffeinated drinks, generally, full strength coke (the sugar helps too) to replace the cerebrospinal fluid that’s removed. But take a bendy straw with you as you should stay laid down flat for at least a couple of hours after the test. These things are to avoid a truly nasty headache that can last several days.

Best of luck with the LP and your subsequent neurologists appointment.

Sue

Hi

I am in the same boat as you, heading towards an Ms diagnosis when I next see neuro

in April. Have had scans which show lesions and positive LP. I don’t feel much different but limbs esp arms are very heavy and at times quite painful. i am noticing very subtle changes. I am really trying to get my head round things, I have had some major meltdowns, really need a diagnosis one way or other as this ‘limbo’ business stinks!

My LP procedure was fine, didn’t really feel anything apart from a slight scratch from local. I wasn’t allowed to leave hospital until I had laid flat on back for 1 hour. Then home to rest whilst drinking full sugar coke. I went back to work the next day and apart from a little backache I was fine, no apperance of the dreaded headache.

I now have an MS nurse, I have contacted her a couple of times and have seen her in clinic, due to see her again in a couple of weeks. Have you been assigned a nurse? They will help you through this minefield.

Good luck with it all

Mel

My Neuro consultant has mentioned that when the results are back from the 3 recent tests then we can sit down and plan next step with ms team and nurses. Just a weird feeling and I think as I have lived with the symptoms for a couple years now thinking they were a trapped nerve in disc it hasn’t really hit me that hard yet. My main symptoms which raised alarm bells were – Left leg numbness all time Left leg foot drop Fatigue at end of day causing limp on left Bladder urgency/delay Other downstairs issues Leg spasms/tremors From brain and spine mri it is very consistent with the lesions/scarring of MS in both. Just still trying to get head round everything as 4-5 months ago thought these symptoms were due to an apparent prolapsed disc until reumatology flagged other symptoms and orders brain/spine mri.

hi danny

a mixed bag of feelings at this point.

relief at no longer being in limbo and concern at having ms.

you survived limbo and you will survive this too.

your feelings will change from day to day and that’s ok.

now you need other appointments - podiatry for the foot drop - this can be helped by a discreet insole to correct the placing of your feet. Bowel and Bladder clinic for your bladder issues.

your ms nurse can refer you to a neurological physio too.

as each issue is resolved or improved you will feel like you are on the way to a win.

celebrate them in your preferred manner.

see your mates for conversation about non ms stuff.

carole x

Hi

For foot drop there are a number of options that can help. You could get a referral to your hospitals Orthotics department, they can give you a sort of splint to put into your shoe which keeps the foot in the right position. Or a simple device like a https://www.ossur.com/injury-solutions/products/foot-and-ankle/ankle-foot-orthosis/foot-up which a physio could get for you. There’s another similar device: https://www.orthotix.co.uk/shop/summer-promotions-google/boxia-drop-foot-afo-1

Or there’s Functional Electrical Stimulation (FES). See if your physiotherapist (when you get sorted out with one) can refer you for FES.

As Carole said, bladder and bowel issues can be looked at, you should be able to get a referral to the bladder and bowel service from your GP. The GP should be able to suggest some help for your ‘other downstairs issues’. The bladder & bowel nurses might be able to help there too.

For spasms and tremors, there are drugs. You should be able to discuss all of these issues with the neurologist and/or your MS nurse.

Once you have a formal diagnosis, there are quite a lot of things that can be done to help. In fact, many of these could have been helped without the diagnosis, but it helps. And for referral to neuro-physiotherapy, you need a neurological diagnosis. It’s crap, because while you’re waiting for a diagnosis, your problems are getting worse!

Sue

Ssssue I couldn’t agree more… I’ve been having problems with foot drop in my right leg for years but I am finally seeing neuro physio next month as I was diagnosed with ppms in November. I could have maybe avoided three bad ankle sprains and a lot of pain last year if I’d been taken seriously earlier. I saw a physio last year through the doctor but he said he couldn’t help me as it seemed to be neurological not mechanical and for years I was told it was probably a squished disk causing my walking problems!!! My neuro has looked at my history and thinks the ms started about nine years ago so that’s a lot of wasted years with no help with walking. Karen.

Hi Danny… sorry I replied to Ssssue and forgot to reply to you. Hi and welcome… hopefully we will both get help from the neuro physio now, better late than never. I have right foot drop, numb right foot and walk like I’m drunk… right leg is heavy all the time and gives up after a bit of walking and stairs are a pain. I’ve also got the bladder problems and I get the hug once in a while, apart from that I’m good haha. Karen.

Hi Karen

I’ve just answered your post on Everyday Living about foot drop. I’ve tried virtually everything for foot drop over the years (as have quite a few other members), so keep asking what you need to know about the various solutions.

Sue

I get this 100% and i get angry with myself as after a short walk and a few stops and dizzy spells I sort of get there arghhh!

Crap isn’t it… I don’t go out much on my own, after falling and spraining my ankle badly I passed out and woke up lying on the pavement with people looking at me and an ambulance on the way!! Scared of falling under a bus… hopefully physio will have some ideas to improve my mobility and hopefully the same for you. Its not all bad cos I still get on the back of my partners bike regularly and can walk OK when I’m holding his arm. Karen

Yeah it’s a weird 1 and hard to explain or for people to understand, when get into work I can almost hop up the stairs but by end of day and tired I’m really slow and almost limping.

danny

you summed up a huge problem very succinctly when you describe “almost hopping upstairs” early in the day but being “slow and limping” later in the day.

it’s very common with ms.

just being aware of it will enable you to plan your day to fit in.

it’s not bloody convenient, bloody unfair but that’s the nature of the beast.

make sure you get some down time, see your mates, go for a pint.

have conversations that are not about ms.

make the best you possibly can of your life.

carole x

The lumbar puncture is playing on my mind for tomo afternoon, any tips of hints to try and avoid the headache and the thought of the beast of the needle?

Hi Danny,

I had a lumbar puncture in November and it was a lot more comfortable than I was expecting - there was a lot of prodding and pushing to find the right place but the anaesthetic wasn’t too scratchy and then I didn’t feel any pain when the needle went in, just a few sensations that told me something was happening!

Unfortunately despite reading all the advice about laying down for a long time afterwards I left the hospital after an hour as they told me I didn’t need to lay down (they actually told me I could go immediately but I waited an hour to be on the safe side) as they said they’d taken so little fluid that I shouldn’t be affected by the pressure drop that causes the headache. I’d definitely recommend laying down for as long as they’ll let you (2+ hours at least) and drinking caffeine, and then stay laying flat as soon as you get home and for the day after as well - I had a bit of a headache the day after so laid flat for most of the day as a precaution, but then I got a bit cocky and sat up during the evening, and the day after that (2 days after the LP) I got a horrendous headache that took 4 days of laying flat and barely being able to function for it to start to shift. So in summary, do everything you can to avoid the headache and don’t get cocky like I did!!

I hope you’re doing ok with the news you’ve had - I’m in a similar situation at the moment so I know what you’re going through and I’m so glad this forum is available to guide and support us when we’re struggling :slight_smile:

Sarah

Hi Danny

i had my LP about 7 weeks ago and although I was nervous it was fine. I only felt a small scratch from local didn’t feel a thing after that. I stayed on hosp bed, leaning over table tray supported by a pillow.

when LP was finished I had to lie flat for 1 hour before I was allowed to leave. Then home for 2 cans of full sugar coke and rest for rest of day. Make sure you buy some coke in. I went back to work the next day and apart from a bit of backache i was fine. No sign of dreaded headache

my results arrived on New Years Eve.

Good luck

mel.

Thankyou guys, yeah got a big bottle of share coke for when get home after and hopefully the headache won’t make an appearance as due back in work on weds.

What can I expect when all the results are back? Evoked potentials/ultrasound/lumbar puncture? Thankyou

Hi

My results were positive CSF in O bands everything else normal. I spoke to my nurse about them and she expects me to receive formal diagnosis when I see my consultant in March. I have another scan next week so hoping the results will be back by the time I see neuro.

i have had numerous scans and bloods the LP, I think, confirms what is expected. Slowly limbo land is coming to an end as I can’t stand it. Need to know one way or another.

Good luck with everything, take it easy after LP and hopefully you will not get the dreaded headache .

Mel

Thankyou, which area are you guys and how are timescales for you guys?