What next - Cerebral Vasculitis

[SteveJarvis]

Hi everyone.. Just an update on my dad (previous post of 71 and just diagnosed with possible cerebral vasculitis) finally, after 6 weeks in Pembury, who were pretty useless, my father moved to Kings yesterday. More has happened in 24 hrs than in the previous 6 weeks. Diagnosis confirmed, started IV of methyl pred today with the likely hood of Cyclophosphamide next week. Pretty scary and not sure what to expect next.... Any advice and information gratefully received.... Thanks Steve

[hamble99b Volunteer]

you must be so relieved! I was wondering how he was.

regards,

sandra.

[SteveJarvis in reply to hamble99b]

Thank you Sandra, your thoughts are really appreciated. At least he is now in the right place and getting some treatment. Pembury was so slow... Is 10 days for results of an MRI typical? Took over 4 weeks to see a neurologist.. They just dumped him on a dementia ward and didn't seem to take his condition seriously... Just now need to see how he responds... Thanks again. Steve x

[Hidden in reply to SteveJarvis]

Hi SteveJarvis,

10 days for a MRI to be reported is excessive. If it is an emergency situation or if the requesting physician has concerns then any type of scan can be reported straight away. The radiologist doesn't have to be in the hospital as they can view scans from home if they are on call. A months wait for a neurologist ( as an inpatient ) is excessive too.

Unfortunately IV steroids can cause psychiatric type problems for some people so it may be that causing the paranoia or I suppose it could be the results of the multiple infarcts that were identified.

I hope things improve for your father soon. I don't know what size of hospital Pembury is but smaller hospitals always struggle with complex, rare diagnosis.

Best wishes

Keyes

[Hidden]

Hi

Would you please tell us more about his MRI? Was it clear? Has he had any other scans? When you say, "possible" cerebral vasculitis, it hasn't been confirmed? I struggled myself in local neurology myself over many years. Sorry for asking too many questions. My good thoughts are with you.

[SteveJarvis in reply to Hidden]

Hi omega, it was described as possible last week, since at Kings they are pretty certain that's what it is... Although everything I have read suggest tha it can only be confirmed 100% with a biopsy! which is deemed too risky???so far he has had around 5-6 scans, 2 MRI, one with GAD, 2 CT sacs, a CT angiogram, and EEG, and poss more...the MRI with GAD showed multiple,microscopic infractions, He not reacted we'll today to firs dose of IV steroid, suddenly paranoid... Is this usual? Very scared... Due for further updates from consultants tomorrow and Monday... Thanks or your thoughts..xx

[Hidden in reply to SteveJarvis]

Hi Poor you. I've been to Kings before (nearer to Christmas many years ago) so I know what you're going through... Many thanks for your update. Please look after your good self.

[EOS7D]

Dear Steve

I did try and submit a piece relating to Cerebral Vasculitis on one of your earlier posts, but somehow my problem now in remmission and confusion had me pressing the wrong buttons and I think it was lost.

I have penned my experience back in 1997/8 for Chelsea22 so if you read that and do a google search on the article I mention you will learn a lot (the article was by my consultant at the time specifically about a 49 yr old male-(myself) )

My condition was pretty dire, it was November few thought I would see Christmas or The New Year at that time let alone 15years down the line talking about it.

If you need to know anything more specific and I can be of help I think there is a private bit on this site you can correspond to me with please ask.

[SteveJarvis in reply to EOS7D]

Thanks EOS...I'll see if I can find it.. And am sure there will be more Qs over the coming days...thanks

[EOS7D in reply to SteveJarvis]

Google is Systemic Vascilitis or Not That Is The Question

[beani in reply to EOS7D]

Please could you give the URL for the document you refer to here as I've been unable to locate it using Google. Many thanks.

[EOS7D in reply to beani]

(Hello beani try this it should be the first one up, you do have to click on it, probably best copy paste into google then click on the result. let me know how you get on with that method) systemic vasculitis or not that is the question

[EOS7D in reply to EOS7D]

It is the first one up but I have just tried the 2nd and that appears better, perhaps when you first did a google you included the " " which I put in just to highlight the phrase Systemic Vascilitis or Not That Is The Question.

Best wishes

Ps

Let me know how you get on, please excuse the green clashing with the purpery.

[EOS7D in reply to beani]

Hello beanie any luck with the google or any of the search engines?

[mamatee13]

He's in the very best place. We have nothing but praise for the staff of that great hospital. Do wish him a full recovery and a Happy Christmas

[SteveJarvis in reply to mamatee13]

Thanks Mamatee... They are 1000 x better that Pembury... Xx