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!

@CheeseSandwich1 With the best will in the world, stop this now. If you were seriously at risk we would have sent someone to your house to get hold of you. Your consultant is obviously not that worried, not because they do not care but because, to put it bluntly, they do not consider it is life threatening.

Having had a stroke, I promise you that it is not always likely you would realise in the early stages or indeed get to a phone to ring 999 when it was full blown, so you can stop the nonsense about not sleeping, as it can happen at any time. What your neurologist is doing is working through a surgical sieve to find a diagnosis to eliminate possibilities until they reach the appropriate diagnosis.

Now, get on with your life and ensure your children enjoy the weekend and try not to pass your health anxiety onto them.

Having read the very sensible replies you have been given here, and your responses in which you repeatedly choose to misrepresent clinical staff actions and to spiral, I would suggest that you do what you want and attend A&E. You clearly aren't getting the response or attention you are looking for here. With kindness, the level of anxiety that you are nurturing is far more likely to cause you health issues than waiting a few days for tests that MAY show that you have a condition that in SOME cases can raise vulnerability to stroke.

Please seek help for your anxiety. You mentioned a very small baby. You may have some post natal health needs and something could be done to help with this. Post natal period can be rough ailots of people's mental stability takes a wobble.

The tests are to exclude anything serious, you may be fine but if you did have vasculitis or anything else, the department would be negligent for not investigating. Monday will soon be here and the results will come back quickly. Please try to calm down, being anxious makes things worse.

It took well over 18 months from first symptoms ( of iritis , rash and joint pain) to getting a formal diagnosis
I was seen by ophthalmologist who finally referred me onto dermatology and rheumatology for further investigations and biopsy of lesion on my ankle
i ended up with 2 large ulcers on both legs which took months to heal and have been left permanently disfigured
I was initially started on high dose steroids and methotrexate- stayed on steroids for nearly 2 years and on methotrexate for over 6 years!
I have been off all medication for 18 months now and no further flares ( but have permanent nerve damage and neuropathic pain for which I still take gabapentin for)
l've no idea what triggered my vasculitis and consultant rheumatologist who I received care from couldn't give me any definitive answers, but I'd had a tooth abscess and root canal work about 9 months before my symptoms first appeared and I've read that chronic inflammation/ infections can be a cause in susceptible people ( my mother and grandmother both had rheumatoid arthritis, which is also autoimmune disease)
The neurologist will most likely not have all the answers...and you may need to be referred onto other specialists ( rheumatology/ renal/ haematology/dermatology....to name a few)
it's like piecing a very complicated jigsaw together and one size does not fit all!
Good luck with your investigations, you may not get definitive answers for some time though

@reversegear if you’re on the 2ww pathway then it is the job of the hospital to tell you you results, not the GP. Your GP may not even have the scan report yet.

As others have said, if it was that serious you would have had more than 2 calls. However if you are waiting for results that may come from a medical professional who doesn't have more than a few minutes between appointments, you pick up the phone regardless of what you are doing. Alert them on Monday to the fact you need another call back and then stay with your phone until they have phoned you back!

Im sorry op it is a stressful situation for anyone undergoing medical testing. I have a family member who was diagnosed with vasculitis it took many months of GP appointments before being referred and then a further wait for treatment. Even if they had managed to speak to you it would only have been to update you there wouldn't have been a diagnosis and treatment that day. Kindly you need to calm down the stress and anxiety from worrying will cause a bigger issue

Thank you for your response, I really hope you’re doing ok now!

My Mum also has RA which is what has thrown me off, as one of the tests is for that. She was also on Methotrexate for years via injection and it took the life out of her which was heartbreaking. I think the thought of being on steroids and immunosuppressants is really stressing me out as I saw first hand what it has done to my Mum. She now has a lot of health problems as a result of the meds she was on.

OP if you’re feeling this anxious and not letting yourself sleep, and you have a history of psychosis, your husband needs to come home.

I have a Brain Tumour. Lived with it for 20+ years. I have regular scans and live with huge balance issues. I have been waiting and battling since March as my symptoms have increased. Series of scans, all of which have taken weeks for results. Latest scans were five weeks ago and I'm still waiting.
Today I received a letter, dictated on 1st July and typed on 22nd July, saying that my Neuro Consultant has referred me to ENT.
Goodness knows how long I will wait for an appointment.
OP I appreciate how hard it must be for you, but I find that it helps me to keep busy. Sitting thinking and worrying really doesn't achieve anything.
Good luck.

I agree with this reply, not because I'm worried about your physical health OP but because I'm worried about your MH. You said that you say you are beginning to feel unwell mentally, you have a significant MH history, you said your little one is practically newborn (if you're post-partum you're more at risk) and because you're not letting yourself sleep (which for me acerbates my MH issues).

I was called 8hours after a blood test and told to open my front door and wait by it for an ambulance.I had another blood test and the results were explained just before I was admitted.

I’m sorry to hear you’re becoming unwell again. You said you have a young baby - are you under the perinatal mental health team? They can help support you with the uncertainty and stress. There are also some rare autoimmune psychosis illnesses so I would think a psychiatrist discussion with the neurologist in the future might be helpful for you. All the best x

This is why they tell you not to open it. You have no context and all that will happen is you panic and spiral and high blood pressure is not helpful to you. Better you be left ignorant for a few days if they can't reach you before the weekend, than working yourself up and exacerbating your symptoms.

Hi OP, I just wanted to say I understand how you’re feeling to an extent. It can be difficult to trust the healthcare system when you’ve been badly let down before. I had a traumatic labour too (and a 14 year journey to getting my endometriosis diagnosis prior to that). When you’ve been through something similar, it can be difficult to trust that you’ll be helped or even taken seriously in a healthcare setting. I completely understand why you’re feeling so stressed and frightened.

I think PP is right though, that you would have had more than 2 missed calls if there were urgent concerns. Is it possible that neurology are actually being very thorough, and these are tests to exclude vasculitis rather than confirm?

Try not to worry too much, I know it’s hard when you have little ones. Do you have a friend or family member that you could talk this through with in person? Somebody knows your medical history and understands what you’ve been through? MN is great but they’ll have the full context around your fears.

Obviously you still need to speak to the consultant on Monday, but take a photo of your results and upload it to Chat GPT, ask it to explain the results and any implications to you in layman's terms.

I did this last week after an MRI. I still had to go back to my GP for a referral to a specialist surgeon (as a mass had been found), but I was able to call the surgeon's office (previous similar surgery) and the receptionist booked me in for a rushed appointment the next day, before I'd even gone back to the GP. I'm now having surgery on Tuesday, so mine was fairly urgent.

I'm not suggesting that Chat GPT replaces a doctor, but it gave great information, explained the various scenarios I might be looking at and the three most common surgeries used, depending on a few other factors. It also gave a list of suggested questions I might like to ask the surgeon. So it meant by the time I was seen, and the surgeon was discussing surgery, I had an idea of what it was and was able to ask the right questions.

Wishing you all the best.

Please try and calm yourself. As others have said, if you were in imminent danger they would have left a message to call back, or called you in. Two calls in quick sucession is not unusual. At the moment they are investigating all avenues. It does not mean that you have this diagnosis. People will often get scared when having tests done if they are told what the tests are for. But they are trying to illiminate illnesses. If you go to a GP with a persistent cough they will of course test to illiminate cancer. When i had a breast lump I had 2 ultrasounds, 2 mammos and 2 core biopsies. All came back fine! Play with your children, relax physically, and call on monday. If necessary get your husband to come home. Good luck. X

Given your update re your H/O psychosis, and your very young baby, you need someone around OP. Is it possible for DH to come home? If not (he really should) is there a family member who can come and stay? I'm worried about your current mental health deteriorating further, rather than your physical health. Do you have the number for your local MH Crisis Team, just in case needed?
If the consultant thought you were at significant risk of a serious medical emergency, he wouldn't just give up trying to contact you.
Do you have any coping mechanisms, that have helped in the past, that you could be trying?

OP you are definitely spiralling and understandably. Strokes/brain bleeds can happen but are rare with vasculitis. I have a rare vasculitis which involves the heart, aorta and surrounding branches including the Brain, I am at risk of strokes, aneurysms (including rupture of the arteries) stenosis and organ failure…but I can’t live my life in fear. I have 3 children.

Please do not cancel plans because if you get these it’ll happen if your sitting on your butt on dr Google or out enjoying precious time with your children.
Just take any pain seriously and then go to A&E. If I need to go to A&E I’ve already prepared myself for a week long stay curtesy of the NHS as the chances my vasculitis hasn’t been heard of let alone knowing how to treat it so it’s a ballet dance of the hospital I’m in speaking to my actual consultant in a top research hospital and gathering the care required.

If they thought you were suddenly going to have a brain bleed over the weekend they wouldn’t have let you walk out of the hospital. The consultant tried to call you and you’ll get to speak to them on Monday. Try not to worry - they may just be investigating further to rule everything out. Try and rest over the weekend and I hope everything goes well for you.

Well then answer your phone! You had been for investigations, you were waiting for a result and then didn’t answer the phone. And then the neurologist rang again and you still didn’t answer!
It’s not their fault that you made yourself unavailable for the conversation you wanted. And then you panicked yourself by opening an envelope that wasn’t addresses to you. And you are being sent for tests to see if you have vasculitis- wait for the results before complaining that no one has explained vasculitis properly to you.

I had lesions over my entire brain and the original radiologist report said it’s likely autoimmune. The protocol was you wait 6 months and then redo all of the scans and check the lesions. For six months I thought I had multiple sclerosis as I had all of the symptoms. There was a family history of brain tumour and ALS.

Follow up scans led to a diagnosis of damage due migraine. Not MS or anything else. It’s not going to kill me. I have had scans since because I’ve had other neurological issues - but it’s nothing. They found some little tumours by accident but I completely forgot I even had them for an entire year until my GP scheduled another follow up scan. They are unchanged.

You are just working yourself up. The Vasculitis is suspected - you need further scans.

Apologies for tone of my previous post - I have just seen your mental health history. Please seek input for your mental health - are you under a perinatal MH service? If you have a history of post natal psychosis and you have a newborn then you should be. Anxiety and lack of sleep need to be addressed urgently and your DP needs to come home to support you and share the parenting so you can rest. Please try to view the investigations as trying to rule out anything serious - they don’t want to miss anything.
If you feel things are spiralling please contact your local Crisis team for support.

When my DD was at serious risk of stroke the dr rang her until she answered. 30+ missed calls as she was in a class (teacher). She was sent straight to hospital and kept in until the risk was controlled, 2 months. So I expect you're completely overreacting about this. You're not going to die in your sleep over the weekend.

I do think the NHS habit of making unscheduled calls is unhelpful. I work full-time and simply can't put all meetings on hold pending a call from a clinician. Can the NHS not send a brief text to say Dr x or the neurology team will call you today/tomorrow between 9am and 1pm?