Takayasu Arteritis?

[miloriviera]

I’m not from the UK, the US unfortunately but this is the only forum i’ve found that have many people with this issue so i figured i’d be welcomed anyway!!

i’m a 21 year old male and for past few years i have had various symptoms that have slowly overtime progressed and although i’m nearly positive in what the issue is, i can’t seem to get help and have been struggling mentally so i figured i’d come on here.

I started having issues with my right arm aching and going cold a long time ago, it used to come and go but now the aching is always there. it progressed from that to right sided neck pain and headaches in my temple and face (my face on the right side will also swell as if blood is pooling in my cheek). i can also feel a vessel right by my collarbone it feels like a cord and hurts very badly. Things progressed from the right arm going cold and aching to my leg also going cold and aching. Finally i started having left sided chest pain that moves to my arm and is through to my back as well (i believe it’s ischemic and it scares the hell out of me) i genuinely believe i’m close to death and will pass due to a heart attack (because i believe my coronary arteries are involved at this point, it has been going on for so long). Also my right limbs are VERY sensitive to cold environments and take a LONG time to warm up compared to my left limbs, i can’t even go near the freezers in a grocery store and the winter is very hard on me. i have a high resting heart rate as well and at times my joints will hurt in my right arm. i’ve also suffered from a pulmonary embolism during all of this. i’ve seen tons and tons of doctors for all of this and have had plenty of ER visits and they all seem stumped. A few of them believe it’s vasculitis but that’s all they ever say and just leave it at that. my quality of life due to these symptoms is very poor..i spend my days mostly laying down watching tv and it’s taken a very big toll on my mental health…i’ve always been healthy and this has completely destroyed me- i feel like my life is over.. it may sound dramatic but i genuinely do feel this way .

Images and findings: Stenosis of both subclavian arteries with arms lifted (i didn’t have imaging of my arms when they were down), calcified and swollen lymph nodes, slightly elevated esr and normal crp, pulmonary embolism (they think at least)

i guess what i’m asking is if anyone with takayasu arteritis could respond..does this sound like what you went through at all? any and all replies or support is greatly appreciated. this is a very hard time for me!! thank you.

[Main1234]

hi I didn’t want to leave your post unanswered so responding to your post.

My partner has GPA so has different symptoms to yourself. It must be very isolating not to get a diagnosis/ treatment especially when you are so young. Have you been able to access and support for your mental health? Are your family and friends aware of how you feel?

We have a great resource with the vasculitis uK and I’m sure they would be able to offer some assistance for you. They also have a magazine that has useful information.

Having a rare chronic disease is isolating so please do reach out and get the support you are obviously needing and come back on this site at any time to let us know how you are getting on.

Best wishes

[oldtimer2]

This sounds as if you need a specialist who can disentangle all of that and do the relevant blood tests. Are you ANCA positive? Have you been prescibed any immune supressant drugs?

How awful that you you haven't found a suitable specialist yet, although they do tend to be in short supply! I hope someone on here wll be able to help more than I can.

[zoe69 Moderator Volunteer Vasculitis UK]

I don't have takayasu arteritis myself, but here's some info about it: vasculitis.org.uk/about-vas...

There is a Facebook group that is quite active ( not supported by Vasculitis UK - so it is not a recommendation from the organisation, but nevertheless you can get some peer to peer support there) facebook.com/groups/5974117...