@Leanne83

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Leanne83

Limbo land and results

Hi I'm new to the forum but have been following for a while. Just wondered how any of you received your lp results and how long after? My brain mri showed demylination and the report states Ms however my neurologist disagrees with my report. On examination they found mild left limb weakness and when I asked the cause and what had caused the demylination he said he didn't know. I'm experiencing various symptoms and is effecting my home and work life. Symptoms aren't managed great. I've been off work long term sick and recently returned with adjustments but is tempory. I've not been right for along time and put it down to stress but I've been like this since last May and just need a confirmed diagnosis. Had my lp 2 week ago. My next neuro appointment is due end of May time am expect to wait until then or do I take it no news is good news. I don't want to phone cause they are busy and don't want to be a nuisence. Any advice is much appreciated 🙂

Highlander

@Highlander

@leanne83 Hi welcome to the club! When I had my LP it took about 4weeks for the results to come back. Not sure where your from, but that seems to be the norm for the UK. So hang in there won't be to much longer. If you're notified by letter as I was, it tells you what they found...hopefully your neuro moves your appointment up quicker, hopefully. Any questions you have please feel free to ask, we'll try our best to find an answer. Welcome

Stumbler

@Stumbler

Welcomr out of the shadows, @leanne83 . 😉 Your Neuro is the only one that can formally diagnose MS. They will need to ensure that all the correct boxes are ticked to make a formal diagnosis. There's no harm in chasing up the Neuro's secretary to find out what's going on. Be a nuisance, but a polite nuisance. It's been a long road for you, so try and put your feet up, take it easy and cruise to the finish line.....

d1zzy

@d1zzy

Hi @leanne83 I waited for 3 weeks after my LP and then rang the neuro secretary like @stumbler says. The neuro then rang me back and gave me my results over the phone and talked me through the next steps. They do understand that this is a very stressful time, and although we always seem to be waiting for something, they do/should want to help. These delays seem to be part and parcel of the process, but that doesn’t mean you are being a nuisance! I hope you get some news soon. 🤞

supermum1983

@supermum1983

It's horrible, been in limbo that happened to me, as I didn't know what was going on still awaiting the results from all the testing. Try and focus on something else word search, mediation a dairy?? hope you get news soon.

Leanne83

@Leanne83

Thank you to all. I've phoned secretary. She's said I will receive results in a letter. Results have been reported on 27th March. She said once neuro have interpreted them he will write to me and gp and if I've not heard anything by next Fri to call her back x

Stumbler

@Stumbler

@leanne83 , just a simple phone call and you've gained some control. Well done. 👍

Vixen

@Vixen

Hello @leanne83, yes it’s a shame we have to often push for these things but sadly it’s true. Keep at it and stay strong x

kellzz

@kellzz

I say bug them! You have to be proactive about your health. I live in Canada and if we are not consistent we can be waiting forever! Good luck!

spenguin

@spenguin

@leanne83 I’m in exactly the same place as you - had my mri, lumbar results came in just before Christmas but my hospital only has 1 neurologist instead of the usual 3 at the moment, I should have seen him at the end of February, so I just have to wait... and it’s tough 😕 my symptoms have changed with additional tiredness and blurred vision, so my gp put that down to dress and urged me to chase the hospital, hospital said that an urgent gp referral would bump me up the list - I’m stuck too, and hate to chase when they’re under that pressure and my gp may well be right! So I’m loathe to go back to her too as she is good (and probably sick of the sight of me😂) If your symptoms are bad, a referral from your gp may carry more weight than chasing the secretaries 👍 xxx

Leanne83

@Leanne83

@vixen @kellzz thankyou @spenguin wow that's a longtime to wait! I'm stressing and it's only been 3 weeks since lp 😳. I moved to a different hospital trust as they only had one neurologist and 5 month wait to be seen at my local hospital so even though I feel like it's been a long process it's probably better than some peoples experience like yourself. Did your mri also show demylination too?? I have symptoms of ms but with him saying it didn't look typical of ms on my scan I left wondering if it's not ms then what is it! I haven't been back to gp in while cause when I've been before they just say need to wait for neuro etc.... I hope you get your appointment soon has your gp not had any letters from hospital re: results?

spenguin

@spenguin

@leanne83 my results are vague, nobody has mentioned ms to me hence why I have lurked here too until I saw your post - all I know is I have 1 lesion on the brain, 1 in my spinal cord giving me constant shocks/pins and needles in one place or another 🙄 and lp showed multi ogliclonal bands - I suspect I’ll get another mri at some point to check for changes before anything definite - but even then may not be ms so I’m trying to put it out my mind as I can function and work, but it’s a struggle as I’m so freaking tired sometimes - my gp is so good but I know I just have to wait for neurologists now as I’m out of her remit - frustrating but that’s how it is, unless something major symptom wise kicks , in which I really don’t want either! 😳 xxx

Leanne83

@Leanne83

I know the tiredness is a big thing for me along with my memory. If I don't write things down it wont get done. I know Ive got 3 small areas in brain but I've not had mri of spine neuro just requested lp. Well fingers crossed we get both get some news soon 🤞xx