Admitted to hospital

[Fusch]

Had quite a difficult few months, bradycardia being investigated, had cardiac mri etc and diagnosed hypothyroid.

Had 4w off work with extreme fatigue and dizziness.

Went back yesterday. Today I have Been admitted to hospital after another ambulance trip, this time with a possible brain haemorrhage. Had a CT scan, awaiting results, had a ridiculous amount of painkillers but still have a terrible headache.

Had paracetamol, ibuprofen, codeine, morphine, iv paracetemol and more ibuprofen (this is since about 1pm)

Don’t have ct results yet, they are holding my warfarin for now

[KellyInTexas Administrator]

So sorry to hear this. If you are up to it, please keep us abreast.

You are under the care of Professor Holmes for neurology, so you are in excellent hands.

[Fusch in reply to KellyInTexas]

I am in my local hospital though, not St Thomas’s or the National hospiral for neurology And neurosurgery

Waiting on results now

[MaryF Administrator]

Wishing you a speedy recovery, I hope they find out what is going on really quickly, let us know how you are getting on please. MaryF

[Fusch]

Dr been

No blood seen on the ct scan but it’s possible small amounts won’t show

Likely to need a lumbar puncture but inr needs to drop low enough for that

It could also be temporal arteritis, need blood tests for that

[KellyInTexas Administrator in reply to Fusch]

Thank you so much for keeping us up to speed.

I’m sure they will liaise with dr Paul Holmes? You must ask them to.

Surely this is a good suggestion? If you frame it as , “ my already established aps specialty neurologist should be part of this loop as it makes my continuum of care more complete both now and moving forward .” They can send him digital scan of MRI plus report.

Interesting, Vasculitis has been loosely looked at in my case from day one. I’m only now just starting to have the ,” red raspberry very small dots “ every now and then. They come with evening fever cycles of a month and frequent migraines that do not correlate with a low INR.

Rituximab might be of benefit for you if it’s Vasculitis. It is important that’s it’s given slowly over 8 hours, mixed with the steroids and antihistimes and Zofran.

I am starting infusions next week for refractory clotting. ( 1000 mg per liter two weeks apart, then every 6 months after that.) it’s also indicated for Vasculitis.

Most patients do very well.

If you are still on azathioprine, that would likely need to be completely out of your system first.

These are simply my thoughts. This is one main reason I think Prof Holmes should weigh in on decisions, especially given you have been or still are on azathioprine under his directive.

[Fusch]

Azathioprine was via Beverley Hunt. I don’t see Paul Holmes now, but two sievuakist neurologists at nhnn - one autonomic specialist and one in cognitive disorders clinic. Neither really relates to pussibke subarachnoid haemorrhage.

I am just trying to get coordination between the acute assessment unit here and st Thomas’s haematology, because my warfarin has been stopped in prep for lumbar puncture but they haven’t set up any sort of bridging plan, neither have I got compression socks. Luckily my partner is here and is advocating for me.

[KellyInTexas Administrator in reply to Fusch]

Beverly Hunt / Breen are top notch.

I hope your pain is better today...

I hope you are able to rest.

Thank you so much for staying in touch. I’m worried.

[Fusch]

The lumbar puncture failed after 3 tries, they couldn’t get any fluid out. They are going to try getting an anaesthetist to do it. So I am lying flat with a dressing on my back, to no avail as will have to do it all again

[KellyInTexas Administrator]

Oh my gosh... you must be so discouraged.

Lay very very flat. I had one leak and had to have a plug from my own blood from my arm. It fixed it almost immediately.

So if you do have complications from it, there is a quick and immediate fix- good to know, right?

This will be soon behind you... it will.

I have a good friend with APS. You know her , too... maybe she will read this and disclose herself on here... but she has the best saying ever when things go wrong due to our illness .

I’ll share it with you now because it’s the only thing that suits your situation right now...

“ Feckin’ APS! “

Yep. I’ll say it for you!

[Fusch]

Hi all. Update from me. No bleeding found, so came home. Have constant headache (since 26th April)

Mri Clear

Waiting for appt with Paul Holmes

[Fusch]

Just updating this. Paul Holmes said he thought it was an unusual migraine , started off a chronic daily headache. Referred me to have a nerve block. I waited a year (delayed due to lockdown) and finally saw consultant at the pain clinic at st Thomas’s. He said he was pretty sure it was reversible intracranial vasospasm. Anyway, had the nerve block, which seems to have helped!