Kawasaki or Takayasu or Teriyaki...it doesn't make the slightest difference!

[MarmiteB]

So, here I am. 1 year and 3 months post op and they still have no idea what has happened to me and I'm not going to lie, it's really upset me. (There are a few f**ks in this post!)

I feel so bloody lost and almost trapped by it. Everytime they try and make a diagnosis there is some other consultant that suggests that it was something else that caused all the damage to my heart vessels and now it turns out, most of my major blood vessels from brain to my pelvis. I'm scared by it, I am confused by it, upset, frustrated and just over it. It's f**king multifaceted.

The consultant I saw yesterday was really kind and he said that rather than Kawasaki's I had Takayasu's disease...

If I had had Kawasaki it was a very severe and it was very rare to have done the damage it has done to my major blood vessels and it's exceptionally rare in adults...if it was Takayasu's then it was very severe and shouldn't have done the damage to my heart that it did. So it's almost like I had both conditions but I have been told that, again, is very rare. So who the f**k actually knows?! Turns out, no one and I have seen some of the best doctors in the UK, probably the world.

However, the consultant did say putting a name to it doesn't matter, it just matters that we rule out that the "Unknown autoimmune caused vasculitis" has stopped happening and has gone away. He said we can call it "Rosie Syndrome" if we like. Part of me appreciated his humour, the other part of me will probably have to discuss "Rosie Syndrome" with my therapist...lol.

I have had further blood work done and I am having a PET Scan to rule out inflamation in my vessels to check I'm OK, so I do appreciate that they are looking after me but I can't help but think "What is THIS scan going to show?!" because I haven't had a scan yet where the results are normal and everytime I have a diagnostic procedure it comes back with "Well, we weren't expecting to see...". Like, every f**king time.

Thank you, writting this helped. Started in tears, ended in wry smile. Any comments welcome, but don't mention Japanese motorbikes...

[Jedx]

dear MarmiteB ,

Reading what you have written runs quite parallel to my unhealthy journey. I too had autoimmune disease called cryoglobulinaemia that also caused vasculitis. It all started when l was in my thirties, l am now weeks away from turning 67yrs. Back when l was 52 l had three episodes of severe dizziness, walking into walls, slurred speech mini strokes. At third trip to A&E they kept me in hospital for two weeks and did every test under the sun to work out what was wrong with me. Turned out l had a 99% blockage of my clavicle artery that was stealing the blood supply from my brain and yes like you it was very rare.

I know it’s frustrating when one specialist says this and another one says that, and you’re stuck in the middle of it all. Seven months ago l had bypass surgery still getting over that one with all the rotten pills they put you on. Never mind a day above ground is a good day. God bless and hope you get some answers soon. X

[MarmiteB in reply to Jedx]

Hey Jedx,

Thank you for your reply, yay, another rare case! We should form a club lol! Sounds totally rotten though, you must have felt so unwell for a long time.

Was your bypass due to your autoimmune disease or just an unlucky coincidence?

I'm sorry that you are feeling rubbish due to your bypass and the following drugs. Is there anything we (the forum) can do? xx

[Deejay62]

Hi Marmite B. I was going to say there seems to be a lot of Japanese words in there so I’m glad you said it. I would be upset, it’s the not knowing. I can’t help you but it seems like the doctors are looking into it by doing the necessary tests. I hope you get well soon or at least find out what it actually is that is causing your illness.

[MarmiteB in reply to Deejay62]

Hey Deejay,

Thank you for your kind words, thet in themselves help. It's tricky because I had a bypass due to whatever it was that caused the damage and now they are just ruling out that I don't have a low grumbiling condition which will cause further damage in the future. So I have to live with I had an acute episode when I was younger with results 16 years later. It's working it all out and putting the puzzle pieces together really. Bleugh. I am OK now... will go and walk the dog!

[Deejay62 in reply to MarmiteB]

It’s a lovely sunny day in London. I hope it’s nice where you are too. Enjoy your walk.

[Helly75]

I've had similar crap for 5 years now ,multiple different diagnosis from one end of the hospital to the other ,then told all that wasn't correct 🤬 so now if someone asks what's happened to me I have very little to tell because I don't know anymore. All I know is I've had myocarditis twice but that alone cant explain the state of me .Gp said I got a very high abnormal autoimmune disease test ,rheumatologist says no it isn't lol . I'm also having a full body pet scan tomorrow morning & had no idea who requested it at first because I've had so many Dr's involved . It would only be me to get all the weird stuff! Xxx

[MarmiteB in reply to Helly75]

Ha, yes, I know how you feel - typical me that it is the weird stuff! Your PET scan should see what's going on as it can see areas of inflammation in the body. That should give you a map at least even if your not sure where the destination is! xx

[Helly75 in reply to MarmiteB]

Thing is I have already had one & let's just say I'm beyond the point of danger with ct scans I'm glowing in the dark by now . The last one showed some activity in bone marrow ,nobody thought to tell me & that was a year ago . If my body would stop going mental I wouldn't go near a Dr again 🙃 such a lot for you to go through aswell & very scary xxx

[MarmiteB in reply to Helly75]

Well, if you ever want to have a chat just DM me - we can always have a chat via watsapp x