Church Straus symptoms

[torfruda]

I have many symptoms of churg strays but blood tests negative.Late onset severe asthma digestive problems sinus problems joint muscle pain eye problems loss of taste n smell heart problems etc.Any advice plz rgds

[Cloe]

Hi Torfruda,

My sister has churg Strauss and wasn’t diagnosed by a blood test.

This is one of the problems with diagnosis there isn’t one test to diagnose, it’s a number of tests combined.

Have you spoken your consultant?

If you’re able to travel to Addenbrooks, in Cambridge they have a Vasculitus clinic there and are brilliant but would need a referral.

You can also ask on here what the locations of the other clinics/hospitals.

My sisters first symptoms was before diagnosis; polyps in the nose for 18months, thick onset asthma for 6months, nodules for 3months, and total severe fatigue, for 3months (she couldn’t even lift a fork for more than 2 mouthfalls), severe stomach pain for couple of weeks.

However, everyone one is different how their condition develops.

Good luck in your journey! Ask all the professionals the questions you need answering and talk on here.

There’s also a Vasculitus Uk Facebook page.

All the best 😌

[torfruda in reply to Cloe]

Hi Cloe thank you for your reply.I have mentioned to a few medics but they all seem to think I’m just unlucky to be so I’ll.Today I’ve had blood test for rheumatoid arthritis as well as host of other problems.Do you know if I have to be referred to Addenbrokks or can I do self referal rgds jill

[Cloe in reply to torfruda]

Hi Torfruda,

I originally emailed Addenbrooks and they said they’d be happy for our hospital to refer her, so we asked our rheumatologist to refer.

Addenbrooks Vasculitus clinic are amazing and as soon as we went there just felt so much more peace of mind that she was in the right hands.

Good luck! And yes it is a very unfortunate illness, however you can work and find ways to still live life as best you can, hope you get your diagnosis and treatment soon and all goes as well as can do.

All the best!

[Riff1954]

There is a lot of really useful information here: vasculitis.org.uk. If you can, speak to the Helpline, details on the website. They are extremely helpful.

[torfruda in reply to Riff1954]

Thank you very much will look at site rgds Jill

[KellyInTexas]

If you do go to Addenbrooks, please consider seeing dr Natasha Jordan. She is a specialist of Vasculitis and APS/ Antiphospholipid Syndrome Hughes syndrome. Have a look at APS and see if it matched your symptoms and history. She can run the blood panel tests.

[torfruda in reply to KellyInTexas]

Thank you Kelly I will look into that many thanks jill

[KellyInTexas in reply to torfruda]

You are very welcome.

She was my Rheumatoligist at a London Lupus Centre. ( London Bridge .)

She has now devoted her practice solely to her NHS practice at Addenbrooks.

She’s excellent. She will be able to sort out these various issues for you with great skill.