Eek! Trying to stay calm

Hi,

Long story short, I had a lumbar puncture just over a month ago. I was worried with new lockdown things would start moving slowly so I emailed the MS nurse to ask about results.

I recieved an email in response saying that they would request an appointment to discuss the results. I know many people have asked this before, but should I be worried that I need an appointment to discuss the results, rather than just a letter to say all good?

I’m guessing it is just their standard. LP results have to be given via an appointment, but I have heard with covid some of these rules have changed. I did recieve some MRI results via email (this was just as lockdown 1 was being lifted) - I know I am just freaking out. But I just wanted to know other people’s experiences of LP results recently. Have they all been through an appointment?

Thanks in advance,

Bettie

No use trying to read the tea-leaves on this one. You’ll drive yourself bonkers and be no forrader for your trouble. Of course you’re worried - who wouldn’t be? - but I really don’t think there is anything for it but to wait as patiently as you can for an appointment to discuss your results, whatever they are. Good luck.

Alison

Hello Bettie

I suspect that the neurologist might want to discuss the results rather than just write because (after looking back) you were previously diagnosed with CIS so it’s possible you now have the criteria to be re-diagnosed with MS. Equally, you might still have the CIS diagnosis, but now have the suggestion that you start taking a disease modifying drug. Or nothing much has changed. Or perhaps the neurologist simply wants to discuss how you’ve been.

Either way, it sounds like a discussion is needed rather than just an opinion from the neuro.

Meanwhile, I agree with Alison (she’s very sensible, that Alison), you can’t really second guess the reason for the need for that appointment. You could try phoning the hospitals appointments team and asking when the appointment is likely to be. Or the neurologists secretary.

Sue

I knew I would get great advice from you guys! :slight_smile: You are all VERY sensible! My life boat keeping me afloat.

I’m so grateful for these forums. I’m impressed you remember my CIS diagnosis, thank you for remembering! I’m trying to stay calm - I needed to hear it from someone else too though. So thank you again!

If I don’t get an appointment this week, I’ll give them a call and see what they say about wait times etc. In the past I have received a text with my appointment pretty quickly, so I assume it will be similar, but we’ll see!

All the good vibes to you,

Bettie

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Hello again, apparently my MRI are being reviewed along with the results of my LP, then they’ll make an appt for them to discuss the results with me…hopefully I’m finally getting answers… News for us both at last. Abs x

Yes! Hopefully good news! The wait is nearly over.

I know how horrible the wait for results is. Stay strong, keep distracted and drink some wine Good luck and I would expect good/bad/mixed news would be delivered through an appointment either way

Hello,

i must say i completely understand, i was CIS in June. I waited 11 weeks for my LP results as needed to be sent away and only had my second MRI end of October. My doctor did not talk to me on the phone till all my results came back for a correct diagnosis which was last week. Been a long road. I know it hard not to think about it, stay positive.

Need a chat am always here Sam x

Hi Sam! Thanks, its so hard sometimes not to freak out over all of this. Just over a year ago I was a happy healthy young women in her mid 20s. Now I’m desperately trying to still be that person and not talk about my health and results,the people who know keep asking though - which is lovely because I know how much they care about me and I know they are worried too. The one thing I am happy about (in terms of health) is that the lp was the last hurdle and I was terrified. I keep reminding myself of that! What was your first symptom, if you don’t mind me asking? Xxx Bettie

Update, if anyone was wondering… I am still waiting for an appointment. I emailed the MS nurse to see how long the wait would be. The response was unsure, but a request has been made for an appointment. I can’t stand all this waiting, I just want to know!

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Hi BettieVR, yep I’m still waiting too! Spoke to Neurology again today and all they would tell me is that my consultant is reviewing the MRI and the lumber puncture then I’ll need an appt to discuss everything, which is what they told me two weeks ago! I asked if I could just get a letter with my results but they said no and that this time he needs to see me…limboland is becoming tedious now Hopefully we’ll both get appts soon Abs x

Argh! It is so frustrating. Let’s hope this is our last, very tall hurdle to get over! Xxx

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My appointment is on Friday!!! EEK! It is in person too. Just breathing deeply and trying to stay calm. I really hope you hear soon, keep on pestering them!

Bettie xxx

Good luck for Friday Bettie.

Boudsx

Hi Bettie VR, how did it go today? Hope ur ok. Abs

Things went pretty well actually. Lumbar puncture showed evidence of white blood cell activity in my spinal fluid. My diagnosis is still Clynically Isolated Syndrome, but doctor recommended I go on an inteferon, its a self injection twice a week. So I’m feeling pretty positive tonight. The prosecco has come out! Have you heard anything yet?

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It’s good your appointment went well and you feel understood, positive and cared for. They are all important for your peace of mind.

Prosecco is also good. An excellent medicine. Well done to you.

Sue

Heard nothing yet…will update when I have news. Feeling fed up and uncomfortable in limbo land! Glad things went well for you x Abs x

I can imagine, you must be so frustrated! I feel your frustration! When did you last speak to them? Maybe chase them on Monday? Sending you all the positivity I can, keep going! I’m with you and I’m sure everyone else in this group is! Betty xxx