Hospital Not Giving Me Any Information?!

[CheeseSandwich1]

Posting on AIBU for traffic

About 6 weeks ago I started with a significant headache that didn’t let up for 2 weeks. GP sent me for CT that came back normal. I was then sent for MRI. 3 weeks went by with no communication.

On Thursday I had 2 missed calls from Neurology Consultant and a voicemail saying to call back to book further tests. I call back and Consultant has left and won’t be back until Monday. I’m booked in for Antibodies blood test and a MRA scan of blood vessels. I ask what it’s for and I’m told only the Consultant can tell me this.

I was asked to come in to collect blood forms yesterday and have the blood test the same day. I asked again at reception is anyone can give me some information as to WHY I’m having these tests. I’m told no one is available and given a sealed envelope and told to give the sealed envelope to Immunology.

I ofcourse open the envelope and discover I’m being investigated for Vasculitis. A quick google search and it shows the Vasculitis affecting the brain can cause strokes and brain bleeds. I’m assuming the initial MRI is abnormal or why would they be doing these further tests?!

What I’m most concerned about is considering I’m being investigated for a significant autoimmune condition that causes strokes and brain bleeds; why has no one told me this?! I’m on high alert now panicking I’m going to have a stroke or bleed, I can’t even sleep at the worry as Vasculitis is really, really serious!

I don’t know whether to go down to A&E to get answers or leave it until Monday?! I’m on my own so no one to help if something goes wrong and I’m petrified!

A suitably qualified professional tried twice to give you an update. They didn’t succeed.

The people who weren’t took perfectly sensible measures not to give you information they weren't qualified to discuss. You chose to bypass that (for understandable reasons). But that’s on them, not you.

It may also help to understand a bit more about how hospitals work. They’re more like shopping centres than supermarkets. The different departments work very very separately (as demonstrated by you needing to carry paper between them). Shared car park and roof and sometimes cleaners and pay roll (but not always). So your experience with one speciality is no indication of what might get from another (for better or worse).

Kindly OP, you’re spiralling and not making sense. How will being asleep or awake make any difference except stress you out further? If it helps you could ask a friend/family member to expect you to msg them a few times a day and say if they haven’t heard from you to take action. But having no sleep won’t help.

In my mind if I start having stroke/bleed like symptoms I can call 999 if I’m awake. If I’m asleep I won’t know it’s happening and would have died before anyone gets to me.

I can totally understand you panicking, but honestly if they thought there was an immediate risk you'd have been admitted. My FIL was contacted by his GP on the back of some routine blood tests and told to pack a bag and present himself at the hospital straightaway. Try to distract yourself, alternatively do you have any family or friends who could stay with you whilst your husband is away?

i was investigated for vasculilitis - in VERY rare cases there is a risk of stroke. Same as there is with the pill.

The consultant tried you twice and you didn’t bother to answer (that’s your fault not theirs) - if s/he was that concerned they would have told you to present to A&E - they didn’t. If you rock up there they couldn’t tell you anything and you’d have wasted their time, this is neither an accident not an emergency

You are being incredibly over dramatic

I appreciate it must be very stressful waiting but it is better to have the results explained by the consultant who knows what they are talking about. Another person could interpret the results wrong and/or not be able to answer the questions you have. Don't go to A&E, they are strained enough and you are unlikely to be able to speak to a neurologist.

They did try to call you - you didn’t bother answering did you? And they tried twice?

You have not had an accident nor is this an emergency. Do not go to A&E.

If you had any risks of needing medical attention over the weekend they would have told you. They didn't because there's nothing you need to worry about or look out for. It can wait.

Can I ask what your investigations entailed? I’m in such a panic. The calls were 4:09, 4:10 one after the other and I just didn’t hear it due to sorting the children out. I called back around 5 minutes later but they had left. It wasn’t like I purposely didn’t answer.

I understand that. I called back 5 minutes later and no one was there. I do feel someone could have called me yesterday, I even went to the Neurology department to collect my paperwork and asked if there was anyone to speak to (I would have waited all day) but unfortunately there wasn’t a single doctor available for 5 minutes all day!

Op, even if it's urgent the MRI results can take a few weeks fir the consultant to look at them. My regular one is normally a couple if months.

For future reference, calls from the hospital are normally always private number or with held. I always answe the phone from these numbers as could be a hospital appointment or the GP ringing me. Spam calls are often a number I don't recognise. So I don't normally answer them. I have had the odd spam call from a withheld number but they aren't normal.

So it is likely urgent?! This is what I was panicking about

I can recommend contacting Vasculitis U.K. for advice
https://www.vasculitis.org.uk
many of those on helpline have first hand experience of vasculitis and the long path to diagnosis!
I have was diagnosed with vasculitis several years ago after undergoing various investigations over a 18 month period!( vasculitis is not easy to diagnose and can mimic so many other diseases!)
however blood tests for autoimmune markers helped to confirm diagnosis ( as did a biopsy of a lesion in my skin)
It's not a quick fix and many medical professionals will never have seen a case in their career...rolling up at A&E will not help in the slightest as they most likely won't have a clue how to diagnose or treat you!

from a different perspective... perhaps the scans didn't show anything worrying at all and they're just doing the bloods to make absolutely certain they're not missing anything.

They tried to call you twice, how many times should they try? Pick the phone up

and the envelope was not for you, it was for a Clinician not you so you shouldn’t have opened it

if they thought it was really serious and you where likely to have strokes etc they would have called you back in, not left you waiting until Monday

I have a form of vasculitis - there are many types and symptoms are very wide ranging. I've never had or been at risk of a stroke. Have a look and maybe post on the vasculitis support uk fb page people are very helpful and supportive.

At this point, it's only a possibility, it could many other things. If they thought you were at risk then they would have recalled you to hospital straight away. When I've had MRI or ct, they've been initially looked at by a radiographer to pick up anything urgent before being passed to a consultant.

Please try not worry

Please don’t go to A&E - they cannot (and will not) address any of your concerns. You need the specialist Immunologu team to do this.

If the scan showed something requiring urgent attention, you’d be sent for whatever medical care was needed immediately.

All that will happen is that you will go to A&E, wait for hours and get more and more worried.

What do you think a&e will do for you?

Your symptoms have been going on for 6 weeks now so I don’t see what difference you think 2 days will make!

I would say it was fairly urgent yes, try not to panic to much though as if it had been really urgent they normally pass it onto someone else to deal with straight away rather then leaving it for the weekend.

So it's probably something that needs dealing with soon but not currently life threatening.

Thank you so much, I actually found this website last night and have been looking at it.

Do you mind me asking were you medicated from the first suspicion? I’m worried that if it takes a long time for all of the tests and the inflammation gets worst (from what I can make of the limited knowledge I have, there was inflammation on MRI) then I’ll be in a really bad way?!

Once you’re in remission did you come off the meds? From what I can see treatment is steroids and immunotherapy including chemo and that’s what’s upsetting me.

I agree with this.

especially that diagnosing will take a long time and lots of different investigations.

It's the highly qualified, experienced and informed consultants job to explain to you face to face what their assessment and plan is, no one else will do this as they don't have the information, experience or qualifications to do so. Wait until Monday to find out.

If it was time critical / immediately life threatening the consultant would have asked for you to self present at A&E and would have informed A&E that you'd be coming in.

Do not go to A&E for information only.

This title is so misleading, the hospital did try and give you information twice and you ignored the calls. Funnily enough turning up at neuro or A&E doesnt mean a dr will be available for you, just because you've decided it suits better. This is the nhs, doctors dont sit around all day waiting on you phoning back and you cant turn up and demand to speak to a specialist because you didnt bother to answer the phone due to inconvenience.

You are a grown woman with children and need to catch a grip of yourself, nobody likes waiting for medical news. They havent diagnosed anything if they are still running tests so calm down. Go out of the house like normal with your children and sleep. I'm sorry but you sound like you're spiralling here for no real reason and need a bit of a shake. If they thought you were about to collapse with a stroke they wouldnt have just left it at 2 phone calls. You are at no immediate risk of anything and you know that otherwise youd be getting someone to come stay.

I honestly don’t know how I will get through this!

I have quite a serious psychiatric problem (psychosis that started after I had first baby) that has finally been controlled by the right medications and I can feel myself becoming unwell again. My main symptoms of psychosis is feeling like I’m poisoned/unwell/something wrong is growing in my body, so this type of thing I can’t deal with.