Can Any Radiologist/Neurologists Help?!

[CheeseSandwich1]

I’ve probably posted in the wrong topic but maybe someone can help?

Started having severe one sided headaches and was referred to neurology under 2 week wait.

Had an MRI with contrast; the consultant has called me twice today (unfortunately I missed their call) and I’ve been asked to go in for further testing.

I can’t get hold of consultant or receptionist until Monday and I’m in a complete panic. The GP and Neurology registrar have refused to comment further. The only thing that is on my GP App is ‘MRI needs further evaluating with antibodies’.

Does anybody at all know what this could mean? Is it cancer, something like MS or can it be benign?!

I’m 27 with a toddler and a baby, I’m completely beside myself and can’t hold it together.

Oh you poor thing. No real advice, but didn't want to just leave you. They are clearly concerned and probably do have unpleasant things to discuss with you. Why can't you contact them tomorrow? Your other option (and be careful as it might make you more panicked) is to ask for a print out of the report from the scan through your GP. They will have a summary of what's been said.

From the voicemail the Consultant and her Receptionist don’t work tomorrow. I think I’m going to go to the GP and ask for a copy of the report. When I rang earlier they were really unhelpful; it’s like they knew something was wrong but didn’t want to tell me if I’m honest.

Oh how frustrating!! When you go, phrase it something like "Dr [consultants name] called me yesterday regarding my MRI. Please can I get a print out of the scan report". Take ID with you. But be aware they may still say no if they suspect it will cause you harm mentally, and that is a valid concern if it's got grave concerns in it. Wishing you all the luck in the world x

What a horrible situation, you must be so frightened. It’s totally unacceptable that you’re going to be left hanging over the weekend with not a clue what’s happening. I’m not a neurologist sorry but I am a doctor. I think speaking to your GP tomorrow is a great shout. I don’t know if this will get you anywhere but I would try to speak to another neurology secretary tomorrow to see if another consultant could speak to you. Failing that I’d be tempted to go through the hospital switchboard and ask to be put through to the on call neurology registrar or consultant and see if they can help. They might not but at least you’ve exhausted all avenues. I would try not to think the worst because they could easily have left you a message saying go to A and E immediately if it was imminently life threatening. And from my very very limited neurology you wouldn’t usually be looking at antibodies for any kind of cancer. Possibly an autoimmune condition. Or just an MRI they can’t make sense of and they want to help fill in the clinical picture or rule things out. There are often strange findings that don’t actually mean anything on a scan. Thinking of you and hoping it all turns out to be stress for nothing.

That's a very horrible situation to be in.
Honestly it could be that they need to speak to you urgently, or it might not be.
If you don't get any joy, the GP route, then don't be afraid of phone around at the hospital a lot until you can try and get someone to give you an answer. The consultant maybe off there will be someone covering neurology, who can at least give you an answer whether they need to talk to you urgently.

My daughter has a brain tumour (one of the 'better' ones thankfully), and I have twice been in the position that the day after the scan I've had a missed call from the hospital. Both times I've gotten a huge panic, tried to phone around lots to find out what it was about. Once I never found out, the other time it was moving an appointment date. It was just coincidence it was the day after the scan. So it genuinely could be nothing to panic about.

But equally, her diagnosis came very quickly after the scan, and from other kids that have been diagnosed that I know of, if they've been allowed to leave the hospital (mine wasn't) they've been contacted the same or next day.

If it is a tumour, and I really hope it isn't obviously, they aren't all as bad as where your imagination is taking you. It depends on the type, location etc. It's still terrifying.

Try to get some answers tomorrow if you can, and know that if it's THAT urgent, they will contact you whether it's the weekend or not.

Best of luck.

Have you checked your nhs app to see if the results are there ?

Not much help overall but it doesn’t sound like a cancer, I’ve never come across antibodies in that context. More likely some sort of autoimmune condition.

I think it would be reasonable for the GO to call switch and ask to speak to the on call neurologist, not for a patient to do that is it. If it was massively clinically urgent needing action this weekend they would have arranged a route to admission or attendance. Obviously waiting and uncertainty is terribly stressful but I don't think trying to direct call random doctors and putting them on the spot will help

@CheeseSandwich1 hope you're hanging in there. I'm sure it's going to be a long weekend but I'm thinking of you x

@CheeseSandwich1, hope you’re hanging in there - are the headaches still strong? My 2pennorth is that ‘evaluating with antibodies’ suggests, as has been said above, that the MRI is suggestive of some kind of inflammation as the cause of the headaches (not cancer - that’s not evaluated with antibody testing). You’re likely looking at a specialised blood test that might take a few days or more to get a result, so take one day at a time, get whatever rest you can with 2 young children, flag up any new symptoms that develop, and hopefully things will soon be clearer.

Not medical, but based on my experience I wonder if they are going to do a followup spinal tap to rule in or out e.g.MS.

If it is MS please don't panic, lots of people manage very well and continue to work, care for children and enjoy their lives. If it is, please look up the charity Overcoming Multiple Sclerosis for guidance on living well with MS.

Thinking of you.

Thank you for all the responses.

I managed to speak to the Consultant’s Medical Secretary. All she could tell me was that I needed blood tests for antibodies and a MRA scan for blood vessels. I was then asked to collect the paperwork for the blood tests and have them same day.

I went down to Neurology yesterday to collect some paperwork that was in a sealed envelope to give to the immunology department. I opened it. They think I have a form of Vasculitis. I feel like my life is over from the limited research I’ve done.

These are the blood tests I was sent for:

Your life is far from over, @CheeseSandwich1. Sounds like your headache sounded the alarm early, if there is a vasculitis there; there are many treatments available to tackle it before the serious consequences you’ve been reading about, happen. Yes, it’s potentially major, but it’s shown itself very early and there are effective treatments available. Stay positive - you have every reason to!

Is it likely it is Vasculitis if this is what they’re querying?

I’ve spent the past day reading everything I can and all I can find is extensive steroid use and chemotherapy which is a route I wouldn’t want to go down.

I have severe mental health problems so adding to it just makes it even worst!

‘?vasculitis’ is written on the form, so presumably that’s what the MRI appearances suggest. That’s absolutely all anyone has to go on, now, so keeping as calm as you can while waiting for the test results, is all you can do. Immunotherapy isn’t chemotherapy by the way!

I can understand that it’s worrying OP, but they are trying to rule things out, or explain MRI findings. Vasculitis covers a huge range of conditions, and they’re obviously not sure whether it even is one, or would be more specific on the bloodstream request. MRI will often throw up incidental findings, which ultimately have no bearing on symptoms or diagnosis.
But, as an aside, @CheekyAquaBeaker I cannot believe that any doctor would recommend ringing switchboard and asking for the oncall neurology registrar or consultant. What speciality do you work in, and do you routinely speak to members of the public without any background or knowledge of their case? Really poor advice.

It was a last ditch nuclear option as OP sounded desperate. I said you might not get anywhere with it. I think if the other option (aside from the other options I suggested) is sitting at home thinking you’re going to die, then it’s worth a try for your own sanity. They can only say no. I don’t think it’s the best idea in the world but I probably would try it myself if I was losing my mind. And yes I am a doctor. I can send you my GMC number if you want to report me for shoddy advice on an online forum.

@CheekyAquaBeaker yes, please do

OP have you contacted your mental health team as was suggested on your other thread?