Waiting on a diagnosis... Looking for advice... - Vasculitis UK

Vasculitis UK

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Waiting on a diagnosis... Looking for advice please

bobadee profile image
7 Replies

I'm currently waiting on a diagnosis and vasculitis was the only thing my doctor suggested I may have, although she did test my bloodwork for a bunch of different things.

Basically this all started last week when I went to the optometrist and found out I have a hemorrhage in my left eye near my blind spot. He suggested I make an appointment with my doctor to determine if there was any underlying medical cause for this to have happened. She said it could be vasculitis and ordered bloodwork. I'm still waiting on the results.

However, at the time of my appointment I had never heard about vasculitis and had no idea what it was. When I went home, I looked it up online and realized that I actually have petechiae all over my arms, and some spots on my torso, legs, and face. I've had these spots for a few years now, but I didn't think of it as anything more than just the way my skin is. I'm now learning that it's actually bleeding/hemorrhaging under the skin..?

Also in the past 2 months I've had a very intense heart beat sound in my right ear. It gets louder and quieter for no apparent reason. I'm learning through my research that this could possibly be a vascular issue as well?

Headaches are a constant thing as well. Just last night I fell asleep with a headache and when I woke up, it was even worse. I haven't had a fever that I'm aware of.

Basically I just wanted to reach out to this group to see if anyone has had similar symptoms as me. I really don't know if my symptoms sound like vasculitis at all. Also, the only symptom my doctor is aware of right now is the retinal hemorrhage (because at the appointment, I didn't realize I had other symptoms until I researched vasculitis).

Does this sound like vasculitis to you? It's so hard waiting for the blood work results and I have no idea when I'll get them. I'm worrying myself sick.

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7 Replies
PMRpro profile image
PMRpro

What sort of headache do you have? Where is it?

bobadee profile image
bobadee in reply toPMRpro

It's on the front of my head, forehead area.

PMRpro profile image
PMRpro in reply tobobadee

If it is around your temples be sure to mention that to the doctor as well as the ear sounds.

I meant to ask how old you are but forgot.

bobadee profile image
bobadee in reply toPMRpro

Thank you,

I'm 24 years old and female.

PMRpro profile image
PMRpro in reply tobobadee

That pretty much rules out one thing I wondered about! But be patient - I know it is hard waiting but all the tests take time, even once you are in the system.

Chris-Bromsgrove profile image
Chris-Bromsgrove

Hi, eye haemorages and skin rashes/lesions can be symptoms of facilities but they could also be completely unrelated. Vasculitis symptoms do vary considerably and a biopsy of the affected area is the usual route to diagnosis. However the one overriding symptom that normally triggers the initial trip to the doctors is you are feeling particularly unwell. Chris

Suzym2u profile image
Suzym2uModeratorVasculitis UK

This page on the vuk website explains about Vasculitis and the eye if it helps vasculitis.org.uk/living-wi...

If you doctor or the optometrist suspect Vasculitis it is important to be referred to a doctor who has understanding and knowledge of Vasculitis. If you contact the VUK helpline by telephone or email they will help if they can. vasculitis.org.uk/helpline

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