Hi, I'm just wondering if anyone has any similar experiences as I'm going out of my mind with worry at the moment. About six weeks ago I developed a severe headache which although it has waxed and waned in intensity has never fully gone away. I also have periods of dizziness, joint pain, scalp pain and mild ear ache today.
I have seen several doctors including a neurologist a couple of weeks ago but the only diagnosis offered up to now has been intractable migraine. I have also had a CT scan and an MRI scan (both without contrast) which both came back normal. Last week I had an ANA panel done, as I do have a family history of autoimmune disease. Everything was normal except for my C4 level which was slightly low.
Obviously I couldn't help googling and now I'm even more terrified as I'm convinced I have some type of vasculitis which is affecting my brain. I already feel like my life is falling apart - I have been off work and have three young children who I'm struggling to care for. I have been referred to rheumatology but have no idea how long this will take. Just wondered if this rings and bells with anyone in terms of lupus and if there can ever be innocuous reasons for low C4 levels?
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Hi, Thanks for replying. I'm 42, and yes my ESR and CRP were checked when the headache first came on as I had presented at A & E and both were found to be normal. Not sure if they've been checked again - when the dr phoned about C4 she said when that came back slightly low, the lab did some additional tests that all came back normal but I never thought to ask what those tests were.
The symptoms you describe COULD be due to a vasculitis called giant cell arteritis, Unfortunately the medical literature trumpets it only exists in over 50s - what they mean is that it is usually found in older patients but there are also warnings in the medical literature that, although rare, it DOES happen in younger patients. About 1 in 5 patients doesn't have raised ESR and CRP values and that is most common in younger patients. There is also a version called Takayasu's arteritis which usually happens in under 40s. I have found no-one yet who can tell me what happens to people in their 40s!
I hope you will meet a broad-minded rheumatologist who would consider it. However, in the meantime, if you develop any visual problems, blurry vision, double vision, strange visual effects of any sort, please go to A&E immediately and be insistent about being seen. Other worrying symptoms would be headache affecting the back of your head (occipital area) or jaw pain when chewing that improves when you stop. The scalp pain and ear symptoms you describe are already suggestive of GCA although there are other things that could cause it.
Yes I asked my GP about that at the start of this because I thought my symptoms did sound a bit suggestive of that. She said no because of the normal ESR! I'm not sure if my blood pressure has been checked in both arms or not. Would GCA show when an optician took photos of the back of my retina? Had that done a couple of weeks ago but eyes were completely normal - no pressure etc. The pain is sometimes in occiptal area - top of head more often than back though although my jaw isn't particularly painful.
Not necessarily - if there is long term severe reduction in blood flow to the optic nerve it can appear larger and paler than it should be where it joins the retina. But it isn't always obvious.
So sorry to butt in to conversation but with my eye troubles and headaches which are a lot in back of head and above eye sore scalp at times ear and sinus probs I wonder if my probs may be related to this but I also get selling hands feet and weirdness. Also last two weeks on the eye that drops shut it has bruising looking darkness intermittently at the bottom but right side to eye with pockets of swelling on cheeks and lips. And can’t help but wonder if the balloon feeling I had under buttock which now just aches occasionally is vascular. Just a thought but a blind thought, as don’t feel as bad as I did but I also don’t feel good still. Again apologies for butting in
No problem at all - it's interesting to hear other people's symptoms and outcomes. How long have your symptoms been going on? Have you had some testing? I went to GP this morning - cried my way through the appointment after a completely sleepless night and asked about GCA but am no further forward, have to wait for rheumatolgy appointment.
If it is GCA, waiting for a routine rheumy appointment may be too late. If you get any visual symptoms - please go to the ED/A&E. GCA is a medical emergency, like a heart attack or a stroke, delay in diagnosis once visual symptoms appear will possibly lead to irreversible loss of vision.
Yes I’ve been and they say fibro but I don’t agree as symptoms not match with facial swellings now facial pains as well as eyedrop and more. Hope your rheumatology is good mine was appalling . Good luck🙏
Swollen feet and hands can be a symptom of polymyalgia rheumatica (PMR) in the form of RS3PE syndrome. And a large proportion of GCA patients also have symptoms of PMR.
If the symptoms get worse or if you develop any visual symptoms head for the ED/A&E.
I had the letter saying my referral had been received on Saturday after the blood test results came in to the GP on Fri but no appointment yet.I'm not sure what else to do unless my vision deteriorates - have mentioned it to a number of drs now and no-one seems convinced.
I don't have much jaw pain though now I think about it - its more non specific tooth pain - and it doesn't hurt if I chew. Is that a good sign? The dr today seemed to think it was unlikely because my pain was bilateral - is the temple pain of GCA usually unilateral? Am just at the end of my tether with trying to get answers now. I'm seeing a neurologist tomorrow though so will mention it to him too. My hands and feet don't look particularly swollen I don't think.
It depends - some people have bilateral pain - and a few get positive biopsies from both sides. Doctors really do seem to have some funny concepts about how GCA can present! No jaw pain when chewing is a good sign - but again, not everyone gets all the symptoms. Another misconception on the part of some doctors!
On our forum we still get patients being reported who have lost their sight despite having presented over weeks and even months with what we consider absolutely textbook symptoms. If you googled them the top potential diagnosis would be GCA!
It's all so worrying - can't count how many doctors I have seen over the last few weeks and I never seem to hear anything like the same opinion twice. I only know my C4 is slightly low because I have nagged for autoimmune testing. I will stay aware of any visual changes though and go to A & E immediately.
Please don’t worry too much, these Vasculitic diseases are very rare. That doesn’t mean you shouldn’t be cautious and get fully tested but it’s much more likely to be chronic migraine (which I’ve had and is horrible) and/ or something you’ll make a full recovery from or something that when they find out what it is, you can get treatment for and will feel much better.
If it was CNS Vasculitis then that would have shown on your scans. Lots of lupus affecting the brain doesn’t show on scans but that one does.
Everyone has different levels of C4 so yours may be naturally a bit low. Do you know the level? If you have an autoimmune disease like lupus, your complement levels (including C4) may get lower when the disease is active but you’d need to find out your normal level when feeling well.
It’s awful when you feel so poorly and don’t have answers and the drs don’t know either. It’s a hard balance between making sure you’re checked for everything and making yourself sick and miserable with the worry it’s something awful. I convinced myself I had motor neurone disease once, everything fitted and I was terrified. But it turned out to be the lupus flaring in my nervous system and brain causing the same symptoms and it quickly got better with high dose steroids and is well controlled now with immunosuppressants.
And even harder when you have young children to cope with and worry about ☹️ My children are teenagers now but I can remember well being in your situation feeling too ill to be the mum I wanted to be and worrying so much I’d die from one of the lupus flares and leave them. But over time (and I don’t know how it’s happened, my brain just realised I couldn’t sustain that level of worry maybe ) I don’t worry. I’ve been life threateningly ill with the lupus many times and hospitalised over 12 times in recent years but I’ve always got better - and my children are definitely nicer people for it. Well when they’re not laughing at how thick I am in the middle of a neurolupus flare 🙄🤣
With your history of autoimmunity and feeling so poorly, it may be worth paying privately for a rheumy if you can afford it for the first appointment?
Hope you got somewhere with the neurologist and feel a lot better soon x
Hi, thanks for your reply, it's very reassuring. It is very hard with kids - the way you described feeling when yours were little is exactly how I'm feeling, constantly worrying about dying while they are young and not able to do normal things with them that I used to be able to.
Would CNS vasculitis show on scans even if they were done without contrast do you know?
When you had chronic migraine, did you suffer from other migrainous symptomsas well? I constantly feel shaky and dizzy but sometimes that reminds me of my aura symptoms with a normal migraine before this started. Obviously that only lasted for a short period of time at the start of each attack though. I'm also quite twitchy but not sure if that's down to Nortriptyline.
I'm not sure of my exact C4 level - I just know that the doctor said they were just slightly low. So, I guess that could be normal for me as I'm not sure my complement levels have ever been tested before.
I am considering whether i should try a private consultation with a rheumatologist. I have paid for both neurologist appointments and the MRI scan because I couldn't face the NHS wait so I guess another couple of hundred pounds won't make much difference at this point!
Feel like I'm having another bad day again today but maybe that's not a bad thing if I'm seeing the neurologist later, perhaps I'll get further! x
Oh yes quite natural feelings and worries to have ☹️ Hopefully the neurologist will be helpful today and yes if you can afford a private rheumatologist, I’d definitely go for it. If you post where you live, people on here can give you ones they’d recommend.
I’m fairly sure CNS vasculitis would show on scans but the neurologist will know. CNS vasculitis is incredibly rare, I saw (quite an old!) neurologist for my migraines and he said he’d never had a case.
Yes definitely with that being ‘stuck’ in a migraine. Mine would vary through the various migraine stages, with symptoms that would normally last an hour or so in a normal migraine lasting for a long time with the shaky, dizzy feeling too. Sort of spaced out and like everything was too noisy, bright and couldn’t coordinate myself, especially in crowds. I get them as part of PMT or if I eat too much chocolate 🙄 but also get them as part of the lupus. Steroids help a lot.
Sorry you’re having a bad day but like you say good for the neurologist to see you like that. Some neurologists can be dismissive if your brain scan is clear but keep pushing for answers xx
Yes that's how I've felt today with dizziness and shakiness and lack of coordination. My arms and legs are very painful as well too today though.
The neurologist still feels I'm stuck in some kind of status migrainous so the next options we have discussed are nerve blocks or topmirate. I did raise the possibility of vasculitis, and he thinks its unlikely but says he will have another look at the imagery from my MRI to see if I should have further investigations.
So now I guess it's wait for a rheumatology appointment or pay for one privately and perhaps try the nerve block. I'm in Leeds so hopefully it won't be too difficult to find one if I go down the private route.
Thanks for your help, hope you're having a better day than I am! xx
I was originally diagnosed with migraine variants. I have undifferentiated connective tissue disease. Your symptoms sound familiar but, of course, that doesn’t mean our situation is the same. Ultimately I was told I had low level CNS involvement with the CTD. The MRI later was abnormal. I don’t know how they would see your symptoms in light of the low C 4.
You sound pretty worried. Anyone would be. It might be best to see a rheumatologist privately to get an opinion on the CTD front. Maybe there is someone the neurologist could recommend. These neurological things get complicated and it would be good if you have doctors who work well together. Happy to talk further. Feel free to message me.
Thanks for the reply. That's interesting that the symptoms ring a bell. I might message you with some questions if thats ok? It's all so confusing at the moment! The neurologist today did say he works closely with the rheumatology team as so many patients cross over so I probably could get a recommendation from him as I don't know how long the NHS referral could take. x
The reasons they've given for it being chronic migraine? He took a very detailed history of the last few weeks and feels all the headache symptoms and dizziness and neck and facial pain could be attributed to migraine although he also noted TMJ dysfunction and some tenderness around my lesser occiptal nerves. Hopefully he's right although there are still some things that I'm concerned about tbh. I did explain that though and he did listen which is when he said he would take a look at the images from the previous MRI.
How are you now, are your symptoms still the same?
Hi yes only now with the eye drop it is getting painful and swelling and my lips swollen today and tinnitus in both ears it was only one before. I feel permanently hot even though extremities freezing and colour changing when cold but swollen and sore when hot. I have blurry eyes intermittently but that could be the headaches. I just feel poo it’s hard to explain, wrists been painful today neck gland swollen and high blood pressure I would go to doctors but can’t face being told it’s fibro no more as def not I know my own body and what I feel . How r u today
I would definitely go back to the drs if I were you especially with the eye swelling if it is getting worse. I know what you mean about not been able to face it though! Are your headaches on both sides or just one?
My head pain is at a relatively low level today but I have had a lot of dizziness and shakiness along with pain in my arms and legs!
I get a lot of pain at the back of my head which is still a headache and awful headache like brain freeze like when you’ve eaten ice cream too quickly but all different place headaches and I keep getting strong pain above eye sometimes before it drops and a small white vein comes up in middle of forehead . Not sure if tongue swells as have what looks like teeth indents around edges. Tonight I have frontal forehead headache and hand feet pain and frightened to move legs incase sets off cramp. I sometimes get dizzy if I stand too quick whicH ain’t often as can’t move that quick and if bend . I’m afraid unless it gets so bad I can’t see or an emergency I will go to hospital but doc will fob me off. I’m waiting to see neurologist but think I need a real good rheumy more than anything given all symptoms. Just can’t afford one at mo but have started saving to see one which is appalling when nhs rheumys should be better or at least this is thanks to dismissive rheumy. Do you know when you are going to see one
That sounds like a worrying set of symptoms too - I know how you feel! Have you had any brain scans yet? Have they explored cluster headaches - think they can cause visible eye drooping and/or swelling. That wouldn't necessarily explain the other symptoms though I guess.
No I don't have a date yet, I received a letter saying they'd received my referral on Fri and saying if I hadn't heard anything by the 15th November to give them a call.
No doesn’t just droop it drops shut so I can’t open it or raise eyebrow but sometimes I can’t move forehead either eyebrow and smile one sided not that I have a lot to smile about 😂
I hope it’s quicker than mine I was told I needed referring sooner rather than later and heard nothing to date.
I wish you good luck when your appointment arrives take care
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