Vasculitis UK

New here

Hello, I am new here and am wondering if something Im experiencing could be linked to my possible diagnosis of vasculitis.

I have not been diagnosed with anything quite frankly but my Dr is thinking it could be vasculitis or another autoimmune disorder. Its a long story (14 + years to be precise) I will give the short version.

For as long as I can remember I have had daily headaches, sometimes they are better and sometimes they are debilitating. Within the last 14 years I have experienced mini-strokes and a massive seizure and other symptoms that seem to add onto of each other and never really go away like whole body pain/heaviness, extreme fatigue, pounding/fluttering heart, feeling my pulse intensely throughout my body and now my hands turn purple when they are below chest level. It was found that my vertebral arteries were both constricted and dissected causing aneurysms in both the left and right artery.

Over the years it has become more difficult and more painful to get an IV or any blood taken. It takes at least 5-6 tries before they are successful. I used to be one of their favorite patients because it was so easy to take blood or put in an IV. Does vasculitis make getting an IV or blood test more difficult and painful? When I explain my concern with this to my Dr's they seem to not believe me. Any info would be appreciated, thanks!

4 Replies
oldestnewest

Hi MrsMohawk,

I think that the inability to get an IV in or take bloods is the least of your worries and isn't diagnostic of Vasculitis in itself.

Are you in the U.K.? When you say your Dr thinks it could be Vasculitis or another auto immune disease are you referring to your GP or a Consultant?

There are over 18 different Vasculitis types, each of them a rare disease in their own right. To have Vasculitis ruled in or out definitively requires a referral to a Consultant who has knowledge and experience in diagnosing it.

Vasculitis U.K. have a phone and e mail helpline, if you get in touch then hopefully we can inform you of a Dr suitably experienced to assist.

2 likes
Reply

Yes I understand the difficulty with getting blood or an IV is not a diagnosis, I was just curious if it has happened to others who suffer from one of the many types of vasculitis. I am not in the UK, I am actually in the US but this site has allot of helpful information. My GP was using the term vasculitis as probably an umbrella term for the moment since I have symptoms that suggest a few different types. I am waiting to visit a Rheumatologist unfortunately there aren't many where I live so there is a 6 month wait time for a first appointment.

I am trying to learn all I can about the symptoms that I have and possible options to help relieve some of them if possible but the difficulty taking blood and getting an IV seems to be quite elusive for any explanation so I was curious if anyone else has noticed this as well.

Reply

I didn't mean to downplay your symptoms or anxieties, difficulty in giving blood/ poor veins is very common and Vasculitis is rare, that was the point I was attempting make.

There is a Vasculitis charity in the USA called the Vasculitis Foundation, might be worth getting in contact with them.

vasculitisfoundation.org

1 like
Reply

Thank you for the information! My Dr's speculations are actually the closest I have gotten to any sort of answer for anything I am feeling and struggling through. I have 6 kids so it makes daily life such a struggle so the information you provided is very much appreciated. If doctors can't seem to figure it out and help me then maybe I can at least help myself feel a bit better.

2 likes
Reply

You may also like...