Vasculitis UK
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Letters have arrived

Hey guys & girls

2 appointment have just arrived in the post from QEBH

A CT Scan of The Sinuses

On Tuesday 11th July @ 2pm

&

A Appointment with Miss L Mclellands E.N.T Clinic - Nasal Endoscopy.

3rd of August

At 1.15pm

Ball is rolling.

Q. I'm a very Anxious patient when it comes to having things up my nose & down my throat.

Has anyone had the nasal endoscopy? & how did it feel? Any advice would be wonderful please, as I am quite frightened & nervous about being sick or gagging...

Thanks x

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Are those on the same day? I would call the clinic asap to be sure it will work. If you are even a few mins late for the appointment at 1.15 and it is a more than round the corner to the radiography department for the CT (and it almost certainly will be) it won't fit together.

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Thank you PMRPRO

for pointing that out,

I've just corrected it, I missed out the second date.

So no, E.N.T is 3rd of August.

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That's fine then - I sort of assumed it would be later since she'll want the result of the CT you would have thought.

My husband had one done - and they are well known here (Italy) for NOT using any local anaesthetics for anything so they may be nicer in the UK. He hates things up his nose too but says it wasn't anywhere near as bad as he'd expected and was very quick. They gave him a tiny tub of salve to use afterwards if it was sore. It wasn't and he didn't!

This is from an NHS patient information sheet:

"What can I expect?

The procedure can be performed in the clinic quite often without the need for a local anaesthetic. However, you may be given a local anaesthetic spray to the nose and throat beforehand. The spray acts quickly but may taste unpleasant.

During the procedure, the doctor may ask you to stick your tongue out, move your vocal cords by talking and puff your cheeks out. This enables the doctor to see all the “hidden” areas of the throat. This procedure will not interfere with your breathing and usually takes less than two minutes. When the test is finished the endoscope is removed quickly and easily. You will be informed of the findings afterwards."

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I'm

Glad someone else can relate to my anxiety.

I'm

Glad it wasn't as bad as he thought! & glad it's over quick.

Thank you for the NHS information.

My levels of anxiety are slowly but surely lowering !

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Hi

Generally speaking Im uneasy about medical procedures but the endoscopy was no bother at all. Little bit uncomfortable. But over quickly.

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Hi Charlieab

Did it make you gag or anything ? I have so much acid reflux swallowing is a bother at the moment. Glad to hear it was over quickly :) I have till the 3rd of August to prepare myself x

Thank you

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I thought it might but it didnt. I honestly think you will find it much less intrusive than you fear. Ive had it twice now. I was worried the first time but not the second.

Hope it all goes well.

best wishes

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Phew !

I'm sure my fear is always heightened with things like this.. I've been told that I will be given the results straight away. Which is always a positive. May I ask, we're your results normal? Sorry for prying. I'm interested in those who are having diagnostic tests for vasculitis, I'm just going through the stages I guess

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Me nasal endoscopy was for eusctachian tube problems not for vascilitis.But Im guessing its the same procedure.

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Oh I'm sorry I was wrong to assume.

I've not heard of Eusctachian tube before, I hope your feeling better & have all the answers you need.

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Nothing to apologise for. I would have assumed teh same. The ETD was the first sign that something was starting to go wrong. But tbh so much has happend since that I hardly notice it. It just means in patulous ETD that the tube between my mouth and my inner ear stays open and so I hear my own voice loudly in my ear. Though I have to be careful not to shout!

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It's always the first unusual signs that something is starting to go wrong. I've had one thing after the other. I've never heard of that before, is it painful for you? Ouch

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One thing after the other has been the story of the last two years. I can 100% sympathise. Problems started in my ears, moved to my eyes, then to joints, muscles, and skin. Its been pretty unrelenting. But Im lucky so far in that I dont think internal organs are affected (apart from brain adn GI tract). How have things been for u?

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Woah we're both two peas in the same pod! Bless you it's a pretty rubbish pod too!! Mine started with skin joints , kidney, now lungs, heart, eyes, sinuses, ears, throat intestines, My whole system has gone down this time. I've a terrible infection in a skin biopsy wound, so I'm feeling like I've been hit by a freight train, I'm not sure if you can read my older posts but if you can, your see the process. :)

Have you had a diagnosis yet x

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Im sorry to hear how hard things are atm. I think I did see the biopsy picture. Hope wound is healing up now. It looked like it could be pretty painful.

Ive had quite a lot of diagnosis in the last 12 months, including two autoimmune ones and loads of assorted ones (such as osteoarthritis, osteoporosis, hearing and visual disorers). Its the severe multitone tinnitus which really gets to me. Im looking to buy somewhere near a city centre where the background noise should help a bit distract my brain from the tinnitus. That or under a flight path!

But Ive not yet had any diagnosis of vasculitis or APS which seem to be the most likely causes of some of the unexplained symptoms, like swollen fingers and livedo reticularis. Im seeing a vasculitis specialst next week and so may know a little bit more. Or may be will still be in the dark!

Take care and let us know how the wound is going.

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Hey Charlieab

Ahh :) thanks, I'm sorry things are very hard for you too. It's a relentless pursuit!

Wound is badly infected, skin around it has just started peeling off so it's left raw patches of flesh 😱

it's so painful ! If only I owned a Saw! Haha!

Jeez! You've been through the mill! Gosh, I know about auto immune diseases I'm just awaiting to hear if I have more than just one. Crikey this must be so difficult for you to juggle all at once! But I take my hat off to you. Tinnitus is that ringing in the ear ?

Sorry

I'm not well educated yet with the ears even though I'm beginning to have problems with my Own

I've recently had some weird sounds in mine ! Strange !

That would be loud living under or near a flight path haha I'd end up deaf !!

I'm due to have tests for APS, lots of issues with clots, high blood pressure, swelling, cardiac issues rapid heart palpations & it happens at rest. My highest is 175bpm.

Blacked out a few times!

I get the old swelling in my hands & more in my feet so I can empathise with you. I'm so happy to hear your going to see a vasculitis specialist. From my experience I've been kept in the dark for many years by my own doctors, who's known me since I was born, when I was finally referred to a Vasculitis specialist last Friday, it was the best consultation I've had in years. Bought me into the light for the first time.

Keep me posted would love to know how you are & how you get on :)

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Hi Laura, I have had a couple. It's slightly uncomfortable, but I didn't find it painful. They did put a spray up my nose first which helped and try to relax as much as possible. You will be fine.

Take care

Suzy xx

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Hey Suzzy,

As much as I'm trying to stay calm & others opinions have sort of dampened my fear I still can't shift my anxiety. I go to a phobic dental clinic as I have bad panic attacks every time I sit in the chair. There great with me & sedate me which is much more relaxing & comfortable, So I don't think this is gunna go down well! But thank you for your message it does mean a lot xx

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Laura, i have had this done about 4 times. I am the biggest coward going (i have a permanent yellow streak down my back LOL!)

The first time, as soon as the ENT consultant put the camera up my nose she knew what i had straight away (this was when i was still a "mystery")

All i can say is it isnt as frightening as we let ourselves believe. The camera goes up your nose and then checks your throat you just have to count from 10 down to 1 or say a few letters of the alphabet.

It takes only a few seconds.

The way i do things now i have a treat planned for after, so while it is going on i think of what i am doing later. If it is an early appointment i go for breakfast, a later one i go for a nice cuppa and a cake/toasted teacake, or even have my eyebrows threaded.

Good luck, i cant wait for your post after to say how easy you found it and wished you hadnt worried so much. XX

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Greenkit... woahhh 4 times!

At least you know what to expect so I'm taking what you say in as you've had some experience with this !! I think I'll have a permanent streak too !!!! Lol !! Got one trailing now just thinking about it 😂 gosh that's funny !!! Laughing fit on its way !

That's good that she knew right away !! What was it ?? If you don't mind me asking.

I just hope it's over & done with & I don't throw up. If I didn't have a fear of vomiting I don't think I'd be worried at all.

That's multitasking at it's best.. tube & talking.. she can check my heart whilst she's at it as it will be in my throat too.

Prob is my cardiac issues are when I'm at rest.. so if she asks me to relax which is gunna be impossible but if I somehow conquer it my heart rate is gunna be off the scale. Blood pressure too!!

I have to remember it's only gunna take a few seconds.. chant chant chant 😂

Treat is a good reward.. that's a great way of thinking, I'll take a leaf out of your book & try that.

I'm sure I will write a humorous post after it's done Hun, that's if I haven't passed out ! Lmao ! I even have it on my alarm.. & Calendar. As - Omg it's tube up the nose day!! I repeat tube up your nose Haha 🤦🏼‍♀️😜😱😂

Xx

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Laura, i have Wegener's but as it is known now as GPA. It took me years to pronounce Wegener's right, then they change it to another tongue twister LOL!!!

I too have the gag effect but, i have to say it does have that effect only VERY SLIGHT. Remember the camera doesn't go into your throat it just checks your vocal chords that is why you have to talk AHHHHHH EEEEEEEEEEEE, Ha HA!!!

The best thing to do is think of something nice or funny while waiting to go in. I always think of funny things my niece's have done then i daydream before i know it i am called in and in no time at all i am back in the waiting room on my way for my treat.

Oh and i always blow my nose before i go in ....just in case.... LOL!!!

I would change your alarm & calendar reminder to REMEMBER TO BLOW & CLEAN NOSE!!!!

XXX

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Ahh GPA, that's what all my diagnostic tests are for..

I had struggled with pronouncing Wegners.. GPA is much easier !!

Very slight... arggghhhh ok.. I'm just gunna suck it up & stop panicking about it cuz it's giving me a belly ache lol !! Oh good !! To be honest I just wanna get it over with now..

I do have some tumour's in my throat. One benign the other is abnormal. I was due to have it cut away & a biopsy last May but I fell sick & wasn't up well enough to be put under anaesthetic.

I told my specialist so she is now aware of it. & said they will be able to see if there are any more.

I've been loosing my voice off every now & then, hoarseness, dry throat, & a cough that comes & goes. I can feel it when I swallow so I'm due for a endoscopy too. Omg that's even worse !!!!!!!!! Prior bad experience I asked to be put under..

I will try & think of something nice, & I will definitely blow my nose !! Reminder changed! Xxx

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