Vasculitis UK
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Ostrich Syndrome

My husband Keith has severe Rheumatoid Arthritis, Raynaud's (sorry about the spelling) Syndrome and Severe Ostrich Syndrome. Ostrich Syndrome? I hear some of you asking. Classic case of head in the sand, I don't see it, I don't know about, so it can't happen. A couple of time's I've tried to raise the subject of the risk factor's with Rheumatoid Arthritis but his Ostrich Syndromed flared up. Tried again the middle of last week, again that dreaded flare-up. Friday he gets up has a cuppa and then say's his leg has gone dumb, he wobbles to the bathroom and back. He keeps complaining about his leg and that now an arm is feeling the same, I tell him its not normal to last this long and that I'll phone the Dr's. Another flare up with his Ostrich Syndrome. Anyway I phone the surgery and the receptionist spoke to a GP and came back to me saying he can come in at 4:40 to see a doctor. He drove me to a hospital appointment that morning, don't ask I think it's a man thing and then drove to the GP's. GP say you're going to hospital, well he nearly fell of the chair. Seems he's had a Stroke, I did try to let him know he was at an increased risk for certain things. Whilst there one of the consultants came round with some students. I nearly wet myself laughing as they went through a long list of things he's a risk of, I think it may have cured his Ostrich Syndrome though. He's home now, it was a mini stroke or warning shot across the bow's.

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Hi, I'm just new here today but thank you so much for a good laugh 😂 I hope your husband is doing OK, and you too! I have been on both sides before, bowel cancer and colitis (now some kind if vasculitis, they are testing...) for me, and my husband had serious stroke four years ago at forty five. Believe me it was easier being the patient than the carer!

I have heard of Ostrich Syndrome before, and it had been an older man who was afflicted then too! You are doing a great job!

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Hi, laughing is the best way for me to cope. My skin biopsy showed vasculitis and from what I can find out bloods showed c-anca positive. Skin clinic say's urticarial vasculitis but won't tell me my blood test results and believe me 8 of those little bottles they used seemed a lot to me. Most of the time its 4-6 bottles and the same things they're testing for, gets a bit much at times.

GP got me an appointment with a Rheumatologist because I keep getting blood in pee. As if them at the vampire dept., didn't take enough I seem to be chucking the stuff out without the need for needles. Anyway after going through all sorts and everything shows no kidney stones, guess what. Another pee test and more blood ee blood test and a probable kidney biopsy.

Seeing GP later this week and am going to ask her what my blood test are showing, OH and can I have a new body please this one's a bit faulty.

Do you think they can do that on the NHS the new body that is. lol

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Sounds similar to me. I seen consultant yesterday again and organising kidney biopsy. High blood in urine but bloods say kidney function fine, they don't understand! Rash has gone inactive so no good for biopsy. Arthritis has kicked off big time in hands which is no fun,especially as I am a Potter! They are holding off treatment until they can get full diagnosis but they are ready to go with steroids and immune suppression asap.

😂 I know what you mean about the vampires! I asked them cold they just not fit a tap!!!

Now the new body is a great idea, would there be a catalogue to choose from? 😉

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Do you want some of the rash on my back? There's plenty to go around. Yes they do come and go, mine stay for around 3mths and then take a 3wk holiday before coming back on parade.

The tap sounds a brilliant idea, we could fill their bottles and send it to the vampires via their own taxi.

Oh yes we would have to have a new body catalogue so we could choose and maybe a try before you buy service to get the right fit and look.

The skin clinic wanted to put my straight onto Dapsone but I don't have a bacterial infection. I asked if it was safe and reminded them I have late onset Asthma and COPD, they said it was not a problem. Then they said about the common side effects, hello O they're the same as the symptoms I get with the Asthma and COPD, so how am I to know which is which. Symptoms or side effect? She just giggled and shrugged her shoulder and turned away. OOOOkay, get home and re-read the destructions with the pack, then threw them away. Did you know one of the possible but rare side effects can turn you blue? Didn't fancy walking around Sainsbury' looking like a giant Smurf, bad enough if the rash puts on a public display and the feet play up so I'm walking like King Kong's mother.

Its nice to find some-one like me, a bit whacky with a warped sense of humour and able to have a laugh at ones self.

At least I'm now at the Rheumatology dept., thanks to one of the GP's and Rheumatology they said they will refer me to the Vasculitis clinic

Any way take care and you know where I am. In cyber-space.

Oh and don't let the vampire's get to you.

Sadly garlic doesn't work.

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Dear Boudica1,

Perhaps you could go to, your local, garage- you know the one, it advertises 'Full Body Repairs'.....Maybe the Body Shop.....

Sorry I'm NOT unsympathetic, I'm just Picking Up the jovial thread.....Do we ever need it! I actually know, quite a bit, about Kidney 'Problems'. I had a Kidney Transplant, in July 2013, following four years of dialysis. So, if you have any serious questions, I will try and answer them.

I believe the Pathology Department, is currently advertising......They had a reply from a consultant, by the name of, 'D. R. Accular', apparently he is originally from Transylvania. He has changed his 'Brief', over the years, he originally Specialized in necks!

Jokes apart, I do wish you well, as indeed we all do. Please feel free to ask me, or any of us, about Kidney Problems, Vasculitis or any Auto-Immune Condition.

Wishing you well

AndrewT

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Hi AndrewT, love your reply. I find humour helps me through whet ever life throw's at me. Mind you it has also got me into trouble a few times. I have a knack of laughing at what some consider serious things. I've also been known to laugh during a funeral once but I knew the dearly departed very well (family member), and also knew he had planned the service himself, in advance I might add. So some of the content was meant to be funny and laughed at.

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