NEED ADVICE

[JD17]

Hi,

My dad returned from holiday in Malta at the end of January with mosquito bites and an awful rash.

He has been diagnosed to have Vasculitis but by a hospital that knows pretty much nothing about it.

After two weeks of intense pains, swollen legs (unable to walk most of the time), severe stomach pains and chest pains...the local hospital have finally found blood clots in both lungs and both legs...and have finally admitted him to hospital.

However, he is still feeling dreadful, won't eat and is having very intense stomach pain.

The hospital seems ill equipped and lacking knowledge when it comes to this and are basically giving him fluids and blood thinners and that's it.

We as a family are really concerned. We are worried they are missing something.

Any advice would be gratefully appreciated and any contact for specialists in Vasculitis in the north east of England would be so so helpful.

We're a very concerned family.

[Hidden]

Hi,

The best thing is to phone or e mail the helpline and John or myself will do the best we can to help.

Although you can get blood clots with Vasculitis it may that it's unconnected as well. Have they checked the blood supply to his bowel ( mesenteric arteries ) for clots? Have they considered thrombolysis for the multiple clots?

vasculitis.org.uk/helpline

Best wishes

Keyes

[Sjtaylor77]

The Freemans Hospital Newcastle has an experienced specialist team, perhaps contact your Dr for a referral

[NZ_1]

Hi

How have they diagnosed vasculitis? is it based on the rash or based on blood tests ie ANCA test or biopsy.

They need to treat the blood clots which can be life threatening, but also keep an open mind for other illnesses eg Lyme disease or other infections, also need to exclude any other illnesses eg cancer (can present with blood clots and loss appetite eg pancreatic cancer). Ask them to have a multidisciplinary team approach and if needed refer to a tertiary centre.

As Keyes has stated John is very knowledgable and helpful,

All the best

NZ

[AndrewT]

Dear JD17,

Yes please DO contact John or Susan Mills, who run Vasculitis UK and this 'forum'. They are both vey helpful and knowledgeable. I don't know how close you are to Addenbrooke's Hospital Cambridge but Dr David Jane, who is also and advisor to Vasculitis UK, is based there.

As regards your dad you DO need to get him fully 'checked out' if only to dis-prove the suspected diagnosis. Now I'm not saying that he doesn't have Vasculitis-or another allied condition- but, with all the other possibilities remaining unchecked, I'm certainly not saying he does either!

Mosquitos CAN transmit disease, as can tics, leeches (which could have finished feeding and fallen off before anyone noticed) along with an unknown number of aquatic creatures- to name a few possibilities that could lead to 'strange diseases'.

If your father does have Vasculitis, then yes some of the symptoms might fit. 'Tummy Problems', ( pain, wind, constipation, diarrhoea etc.) then you need to get this confirmed as soon as possible.

I KNOW that this going to be hard for you all, maybe the hardest 'thing' that I have said but try not to worry too much! Once your dad has had the right diagnosis, be it Vasculitis or not, then the right treatment can be started. Please will you let us know how your dad gets on will you? We all send our very best wishes and prayers.

AndrewT

[JD17]

Thank you to you all for responding to our message, it means an awful lot that you have taken the time.

I have passed on the messages and we are awaiting confirmation of exactly what tests they have done...they have taken lots of blood tests, they are monitoring his heart, they are keeping a close eye on him...BUT, we're still not 100% convinced that they've completely got to the bottom of this. They are insistent that he has Cutaneous Vasculitis and that it is not affecting his organs...but he is still very weak, wheezy and is still having some bad episodes of stomach pains and diarrhoea...he is also struggling with his appetite so is eating very very little so is as a consequence very weak...

We don't know if this is all down to a slow recovery and a prolonged period of little intake...and if we just need to be patient...we have our fingers crossed that this is the case...

But, we do fear there may still be an underlying problem that remains undiagnosed/misdiagnosed.

He is admitted and has been in hospital for a good number of days now, he in on the stroke ward as there is no room on any other! He is not getting any rest as it is a very loud ward pretty much 24 hours a day...so he is exhausted.

We are going to see how it goes with consultants today and push for reassurance that their diagnosis is correct.

Thanks again to you all for your advice and support, it's invaluable.

Best wishes, Jan