MRI + Lumbar Puncture

[tee8077]

Two weeks ago I had an MRI on my head and one on my shoulder at the same appointment, today I got a letter from neurology with an appointment for a lumbar puncture and MRI. I've always been sure my symptoms are caused by b12 deficiency but nobody will listen. No doctor or consultant has even hinted at what they are looking for. Nobody has discussed the results of the scans with me, just sent an appointment for the procedure which is on the 20th of December. Is this usual?

[Lisahelen]

Unfortunately i think you will have trouble convincing them its b12 related. At least if you go by the book and have all the tests they are prepared to throw at you, you will know that there is nothing else going on to cause the symptoms.

I have waited 15 months and a different dr to at least get some recognition of my neuro symptoms. Finally at last i have got a preliminary appt with neurologist-April next year!!

[tee8077 in reply to Lisahelen]

That's great you have an appointment finally, I don't think I waited that long for an appointment here in Glasgow. He only asked me about the numbness and tingling on my left side and done all the gripping and walking tests etc and said he would book me in for an MRI and that if anything showed up he would write to me. I got the MRI appointment in the following week and it was about a month later, I got that done 2 weeks ago and this letter today, I'm just a bit baffled as to why they would sent me the appointment for LP and further MRI without discussing it with me first. I've got other things going on too, a Lupus related one, it's anyone's guess as to what they are thinking. Waiting is the worst! Thanks for Replying!

[Foggyme Administrator]

Hi Tee8077. Unfortunately, yes. It would be so wonderful if doctors were more forthcoming but it's quite usual for them not to say a lot until all the test results are in.

It may just be that they'be ordered extra tests in an aim for 'completeness' - it doesn't necessarily mean that they've found anything that you need to be concerned about.

The same thing happened to me recently - called back for more tests with no explanation, and when I returned for the follow-up, everything was 'normal' (at least, in that case 😀).

So please try not to worry too much...and it's good news that the extra tests are being done quickly...👍

Oh, and, while I think of it...just in case they forget to say...make sure you lie flat for 24 - 48 hours after the lumbar punch - it will lessen the chance of after effects (migraine type headache - though not everybody gets it).

Good luck with the tests and please let us know how you get on 👍

[tee8077 in reply to Foggyme]

Thanks Foggyme, I've heard all about the headache afterwards and been advised to drink plenty of fluids before and after. I am ok with needles but it's not something to look forward to is it. I suppose it's a plus that It's been booked in so soon, I'm not a big worrier either so hopefully it will be over and done with and I can get back to convincing them it's my b12 lol. Thanks for the reassurance, I'll report back when I know anything.

[helvella in reply to tee8077]

But not too much...

theguardian.com/environment...

Hope it all goes well.

[tee8077 in reply to helvella]

Ughh, I won't be overdoing it! thanks for the info!

[Sleepybunny]

"He only asked me about the numbness and tingling on my left side and done all the gripping and walking tests "

Do you have balance issues eg feeling unsteady (including when it is dark or eyes closed), vertigo,

Did you have any tests with your eyes closed eg walking heel to toe in a straight lien with eyes closed?

Were you given a Romberg Test?

en.wikipedia.org/wiki/Rombe...

Link to old HU thread about proprioception.

healthunlocked.com/pasoc/po...

Some people with b12 deficiency have proprioception difficulties which means they may lose some awareness of where their body is in space.

"Nobody has discussed the results of the scans with me"

A letter about the scans may have been sent to your Gp which you could ask to view or get a copy of.

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

Its also possible to get access to hospital records but in my opinion it's more difficult. May involve a formal written request or form filling to hospitals records office .

I am not a medic just a person who has spent years trying to get answers.

[tee8077]

Hi Sleepybunny, I wasn't asked to walk with my eyes closed and didn't do the Romberg test, I get blurred vision and bouts of irritation which last for days, it's just one thing after another isn't it? I was asked to close my eyes with my arms extended, I walked on my tip toes and heel to toe, he tested my reflexes and stuff, I was only in for 5 minutes, then he said he was booking me in for the MRI "just in case" but didn't give any reason for the scan and that if anything showed up in the scan he would write to me, (this is what is getting on my nerves, he said he would write to me and he hasn't done that) If I had been asked to list all my symptoms I would have been in there a lot longer! having been only given supplements every time my b12 shows low over god knows how many years I have accumulated a lot of symptoms, feelin like a freak lol. I had no idea my constant low b12 was an issue until my best friend moved back here 3/4 years ago and told me she had PA then I found HU and began reading.

I will give the GP a call on Monday and chance it speaking to the Doctor who referred me.

Thanks for your reply, I'll keep in touch on this post and relay how things are going in respect of finding things out, if it helps put someone else's mind at rest I'm in!

[SweetorDry]

Sorry I can`t offer you any advice tee8077, but you have my utmost sympathy. You just get left in the dark, wondering what`s going on.

I`m pretty much in the same boat. Sent for 3 unpleasant tests and left for months wondering what the results were and if they were offering any treatment or suggestions on what was causing symptoms.

Then today... I get in the post, via the hospital, from the Colo-rectal Consultant, a prescription for Omeprazole. Gee. Thanks, mate! Have I got high acid, or low ? Nobody knows... in spite of a gastroscopy. Just Suck it and See??? No thanks! If I`ve got a B12 problem they would only make it worse. Anyway I feel better on the Apple CV most days.

I looked up NHS Gastroenterology Testing guidelines when I started this. It said, "first check the patient doesn`t have a B12 deficiency". Did they ? Of course not.

I`m waiting for MY Neurology appointment in January and wondering if that will be another farce.

Each Specialist wanders around clutching one corner of a jigsaw puzzle, and no-one can be bothered to put the bits together.

Let`s hope our troubles will be resolved sometime soon.

[tee8077]

SweetorDry, I am so sorry you are having to wait such a long time for answers, waiting seems to be the trend around here! the worry and the unknown cannot be the best treatment for auto immune problems, it's so unfair to leave people and their loved ones in the dark for months on end. I hope you find something out in the near future, extremely frustrating.

[tee8077]

Hiya folks, I just wanted to come back and update you on my post. Today was my appointment for MRI and Lumbar puncture, when I got back after the MRI the Doctor who was doing the LP ran through all the ins and outs then asked me if I was ok to go ahead with the procedure, I said I would rather find out why I am having it before I go through with it, cutting the story short he came back after speaking to the consultant and said that the saw evidence of several strokes on my scan last month and demyelination of the spinal chord. I went ahead with the LP, not pleasant of course but no spinal headache for me. I'll come back and let yous know when I get the results. I just thought my timeline of events might be useful to someone else who is in the same situation. I hope everyone has a happy and peaceful festive season and thank you once again for the comforting messages on this site.

Tina