Vasculitis and lupus

I've just got back from seeing a neurologist because of headache I've had for 2 months and loss of use of my tongue at one side which has affected my speech and being able to eat properly. He is waiting to see my MRI but felt sure I'd had a small stroke due to vasculitis. I'm freaking out a little as I still have a massive headache and am now waiting to see my rheumatologist on Thursday. Just wanted to hear of anyone else's similar experiences with this type of thing. I've had lupus for 32 years but not had anything like this before 😖

18 Replies

  • Hi sally21

    Sorry to read of your serious health problems. Have a look at the Healthunlocked Vasculitis forum you might find similar experiences there.

    Good luck for your Rheumy appt, hope you get help soonX

  • Hi, how horrible for you! Lupus is challenging enough without new symptoms coming along, particularly after so many years but you sound like you are being looked after well and I hope the rheumatologist can reassure you tomorrow.

    Meanwhile, I was wondering if your headache is one-sided at all like your facial/tongue symptoms? Last October, I ended up in hospital with a severe one sided headache and vision problems which were put down to migraine. I always thought migraine was a deep ache but mine felt like a spiky irritated vascultis-like problem and was similar to sensations I have had elsewhere in the body (arms, legs, neck). However, after a scan and blood tests, I was assured that those symptoms were likely to be Lupus migraine. I was given Amitryptiline to take in small doses which apparently prevents migraine recurrence and it definitely has helped. Also, I've just had another MRI of my head and neck but like you, haven't had any results as yet.

    Funnily enough, I also have a problem with the left side of my face, tempromandibular (TMJ) and tongue but I've had it a long time now (10 years? - Lupus diagnosed only last year!). At the time, I had head investigations/bloods done and nothing showed up which was confusing although TMJ dysfunction was diagnosed and stress mentioned! Ten years on, I still find it very difficult to talk for long periods and the cold is not good. I have been passed around departments (been to dental, vascular surgery, rheumatology, neurology) for various reasons over the intervening years and have had diagnoses of thoracic outlet syndrome, antiphospholipid syndrome (which has since been negated) and Sjogrens syndrome. When Lupus was diagnosed last year, it all began to make more sense and when I suddenly developed this weird headache, the rheumatologists I saw (3 in all while in hospital) all thought it was Lupus migraine (consensus is always reassuring!).

    Anyway, we all have different stories don't we but I wanted to make you feel less alone with this new symptom and wish you all the best for tomorrow - let us know how you get on!

  • Thanks so much it really does help to know you're not totally alone in all this! After 32 years I thought I had it Sussed, but seems not, Lupus is such a tricky character! I'll post again tomorrow when I have the MRI results and have seen my rheumatologist.

  • Not great news got admitted to hospital and had a further CT which showed up 'something' in the upper spine close to where the pain originates. Today the docs started asking if I had regular smear tests and also asked if I checked my breasts. They asked if they could do a quick check and found quite a large lump. They think I may have secondary bone cancer. I'm totally in shock as I know the lump wasn't there a short time ago. I now have to go through biopsies etc to confirm if this is cancer......

  • Hi eagle,

    "At the time, I had head investigations/bloods done and nothing showed up which was confusing although TMJ dysfunction was diagnosed and stress mentioned! Ten years on, I still find it very difficult to talk for long periods and the cold is not good. "

    You mean, "the cold" as in having a cold/flu or "cold as in cold weather"? thanks :)

    Sallyk..Sounds horrible. some people die from having Lupus. Yes, it can suddenly turn into something serious.

  • lol ferntree I'm well aware people can die from it but didn't really need to see that. I've had it 32 years so do know a fair bit about it x

  • I have had vasculitis in my fingers and they went black & numb. Got rushed into hospital but can't remember what happened after that...but what I do suffer from is major headaches for days & days. Nothing can touch these just sleep a lot.,the Dr's say probably the medication

    I take. Now I think it is more than that so will be bringing up when I see Rhemy in 2 weeks . Hope u get better news, fingers crossed for you. 💛💛

  • Thank you am hoping tomorrow might bring some answers. If I was you I'd try and get checked out re the headaches especially if you've already had vasculitis elsewhere. I really wish I'd pushed my GP more when I first started with the headaches and not left it this long x

  • Can I ask what is a 'Lupus migraine'?

    I seem to get 2 types of migraine:

    1 Classic migraine with zigzags in vision before severe pain on one side of my head and neck and eye. I need to sleep this off.

    2 Dots in vision like the start of a migraine (but no zigzags) followed by stiffness and pain in the back of my neck and neck glands become raised and painful and headache that affects both sides and both eyes. I can sometimes carry on with things but often need a quiet dark room to cope with these.

    I use ibroprofen for both.

    I am being referred for MRI by neurologist to check for vasculitis due to other nerve pains I get.


  • Sallyk 21 I'm so so sorry to hear this news I've been following your posts to see how you got on what a shock for you please please please dnt think the worse my auntie discovered the same 2 years ago and it's all under control now, I hope you have lots of support around you sending u lots of love and a great big hug xxxx

  • Likewise….I have been wondering how you were getting on and am so sorry to hear what you've been through this week. Are you still in hospital? I do hope you are being well supported and I am sorry that I didn't see your latest post sooner. It must all be such a shock and I am sure you are exhausted too. Please do keep us up to date if you can although it is understandable if you don't feel like posting. Thinking of you x

  • Thanks for replying it does mean a lot. I was able to go home yesterday overnight but am back in hospital this morning. I think I will be having a biopsy on my breast today plus a full body X-ray. I'm not dealing with it all very well and feel so sorry for my poor husband. He's doing the man thing and telling me he's fine and not to worry. Lupus is bad enough but this is a whole new world! I'm crossing everything that this is a cruel lupus twist. I'll update when I have more news......thanks for listening x

  • Thinking of you keep us updated wishing you lots of luck for your tests xxxx

  • A bit of a slightly brighter update hopefully! My full body CT came back showing nothing other than the breast lump we already know about. THE doc explained usually if someone has breast cancer and it spreads to the bone (their original thinking), they would expect to see the pathway between the two sites in the lymph nodes, but nothing can be seen. They let the neurologists study my head CT where they could identify something in the bone but they don't know what it is. They've therefore decided to get the breast biopsy done tomorrow then see what that result is before continuing with the bone investigations as I still have the headache. I'm crossing my fingers it isn't breast cancer, but after the hellish few days I've had, this news at least is a little better for now and gives me hope x

  • Hi sallyk21 that's a little better than what was thought, any news from the biopsy?? Wishing u lots of luck xx

  • Unfortunately when they did the ultrasound yesterday they found slight swelling in the lymph nodes under my arm so the did a biopsy of the breast lump and took some fluid from the lymph node. So not looking good again! The consultant explained even though there is no path on the CT between the breast lump and bone changes in the top of my spine it could still be secondary cancer! However they won't know till the biopsies come back on 30th. Luckily they've taken pity on me and are letting me home for the weekend. I've decided I'm not going to let myself think about illness of any kind and I'm going to enjoy myself!

    Thanks so much for you kind messages it means a lot x

  • Aww bless you, and good for you, there's no place like home!! Il be keeping everything crossed for you xx

  • Just to update, I've now had a confirmed diagnosis of breast cancer. They think the bone thing in my neck is most probably secondary cancer but they are still not totally sure but feel it is very likely. On that basis I'm starting radiotherapy on the bone first then probably looking at surgery on the breast. Weirdly so far I'm feeling ok emotionally but am sure there'll be plenty 'meltdowns' to come. Thak you again for thinking about me, it means a lot x

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