I got a copy of the MRI results of my brain on Friday and it says the following: (I've got type it, my phone camera is playing up).
No evidence of acute ischaemia or space-occupying lesion. No mass effect or midline shift. No extra-axial collection. Bilateral tiny frontal white matter high signal could be due to migraine. No hydrocephalous. Brain stem, cerebellum and orbits are unremarkable. Intact craniocervical junction.
Now, this MRI was to investigate the Syrinx Cyst found on my spinal MRI, which is T9-T11. So I'm guessing that this is good news in that the cause of the syrinx is not a birth defect/herniation at the craniocervical junction.
However, the frontal white matter high signal is noted. This appears to be the only finding that leaps out at me. I have always suffered from headaches, from early teens I think. I have suffered various types. They have been diagnosed as migraine, cluster headaches, headaches with myalgia, ice-pick headaches etc etc. However I have never experienced headaches with visual disturbances, so really am unsure that they are the classic migraine type. I have had some corkers recently. The headaches haven't stopped since starting MMF for my lupus in July. 3g a day. But they did stop when on steroids briefly - 2 x 5 weeks courses of 20mg and tapering. I had one yesterday that wouldn't shift, I ended up taking codeine as a last resort before bed, when I knew my husband was here with the kids and I didn't have to drive anywhere. But I've woken up with it niggling again. (I have in the past had headaches lasting 3 weeks when I crumbled a tooth grinding my teeth with it, in my sleep and 11 days continuously).
I am not seeing an NHS Neurosurgeon about the spinal and brain MRI until roughly April 2017. My Rheumy is just awful and my trust in her is out of the window, in fact I am dreading seeing her, I see no real point. My GP has already refused to refer me to the Royal National Hospital of Rheumatoid Disease in Bath or the Lupus Centre in London. So I feel I am between a rock and hard place.
I have googled, as you do and cerebral vasculitis comes up and I have suspected I had vasculitis for a while. Also, high risk of stroke and dementia. Can anyone shed any light? Any tips for how to handle this?
I think really I am on the verge of making a complaint against GP and Rheumy. I have compiled a list of my recent medical appointments with outcomes, including my rheumies unhelpful comments, which show her lack of understanding and empathy. Not sure what else to do.
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Wendy39
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If you want more information about cerebral vasculitis, I recommend that you visit the Vasculitis UK website at vasculitis.org.uk/
It may be worth changing GP. A different, more understanding GP may also be more willing to refer you to a specialist centre for lupus. You can find more information about changing GP at citizensadvice.org.uk/healt...
If you want to lodge a complaint about your current GP and rheumatologist, this website may be helpful - nhscomplaintsadvocacy.org/
Am glad you've got this report...and yes, I agree: good & bad news: typical 😏. I hope you're patting yourself on the back just for actually having a hard copy of this report: that in itself is no small success...
Is there any chance these MRI findings could be significant enough for your April neuro appt to be brought forward?
I can't answer your ?s re cerebral vasculitis etc, but I'm certain others will. And I'll be paying close attention because my case is similar enough for me to follow any threads on this subject...so, thanks 😉. Have you posted on the HU vasculitis uk forum too?
Am v unhappy at the thought of your sore head....For what it's worth, my version of horrific SO-called migraine-like headaches started v early along with infant onset lupus of the vascular type and worsened after a childhood "fall from height on head"...for years I was stuck lying in a dark room for several days when these hit....nothing OTC helped at all. But in my early 20s I was given the powerful prescription NSAID mefenamic acid 500mg for endometriosis pain and was delighted to discover it could stop my "headaches" dead if I took at the vvv first hints. Mefenamic does need to be taken sparingly & with supervision by SLE patients, but my consultants trust me
GRRRR: I feel like banging your medics' heads together....
I have had cause to contact them recently Wendy and their forum is as good as this one. Lots of experience and compassion on there. They really know their stuffband will give you bags of support and solid advice.
Please remember to take someone with you to all appointments and that it is your right to a second opinion on any medical subject. Your RIGHT. Ok not sometimes on a Tuesday if the wind is from the West!!😀😀 YOUR ABSOLUTE RIGHT.
If you go to communities at the top of the page, press communities, you will see the ones you follow, then browse communities bar. Press that and select Vasculitis and follow as you did for this.
Beg your pardon if I am being too detailed but I am so keen to direct you to Keyes et al over there.
Good luck Wendy. I understand talking to walls and the dispiriting experience of being patronised and ignored. Unfortunately, it seems to me, when we need to be forceful, we are at our weakest. You are not alone. You will have the support of us and the Vasculitis community.
Thank you! Like you've all said before I am worthy of treatment too. How many times do we have to prove we are not hypochondriacs! I have been proved right with every test or biopsy or X-ray or MRI I have had done. They still don't want to help. Grrr! x
Thank you everyone. Your replies are supportive and informative, as always. I will post in the Vasculitis UK site to see what they have to say. I have also made an appointment to see a different GP. Appt is 29th November though!!!!! I tend to request appts with either Dr A (male) or Dr B (female). Dr A is the one who has twice out and out refused to back my referral out of the area. So now made an appt with Dr B. I'll see what she thinks in light of the outcome of this brain MRI. It is her that said I had Lupus with CNS involvement. If she is more helpful then great. But if she isn't I might make an appointment to see the practice manager. I have nothing to lose and I'm not too proud to beg. In the meantime I will telephone Neurosurgeon's secretary and ask if this means I move up the list. Thank you again for your helpful responses. Luckily headache left me this morning after ibuprofen. X
I had a MRI of the brain recently. I have had a lot of neuro symptoms including seizures, and other very MS like symptoms. When I read a copy of the report it said "no acute processes." That seemed weird to me, since chronic and past processes were a question as well. I got a hold of the actual disc and to my surprise (or perhaps not so much of a surprise) I had a one bright white spot. This wasn't even mentioned at all. I'm 63 with a history of migraines, so I'm assuming it was considered "normal." I looked at other scans online, and MS spots did look larger and there were multiple spots. A lot of things can be viewed as "normal," which don't really seem normal.
I know what you mean. It doesn't help that previously a radiologist at this hospital told me my X-rays were clear, no action required - when in fact I had lesions on hip socket and had torn my hip lining - I ended up having key hole surgery to shave lesions and repair the tear. It's made me question everything - including how the X-rays and MRIs are reported! Thanks for your response.
We are changing surgery. There seems to be an ethos of blocking anything you ask for unless you make a stand. Sadly, again.
The prospective surgery seems fine. It is stocked with wrm sort of locums because they cannot get a long contract. However the presnt lot are here for at least 3. As it doesnt get seen on your notes, they dont mind how many others you have seen, nor why you left.
Makes me feel,better, irrationally I expect. Doesnt take long to do either. Jumping ship tomorrow me, hubb later. We will let you know re frying pan or fire in due cause!
Good luck over there. They will welcome you. Just tell your story as you have here love.
Unfortunately I have no other surgery to go to. There are only two. I was registered at the other until 2014 and then moved to this second one. The other was really struggling to replace GPs leaving, at one time just having one GP working and was in a terrible state. This surgery is much better for getting appts as they have at least 5 GPs. So I will see how appt goes on 29th then complain to practice manager.
Likewise with Rheumy. As far as I know there is no other consultant Rheumy in my area. There are certainly no lupus specialists nor lupus nurses. (South West Wales).
Also, I didn't think a second opinion was a right. I'm sure someone told me that.
So sorry you are having to battle hard to be seen by specialist consultants!.
Sometimes too having test results like a brain MRI is a double- edged thing as your left with more questions about high frontal white matter and migraines because you don't know if it's significant or not and have to wait a long time to ask!. Shocking that is so I hope it's brought forward!. Migraines don't have to have visual disturbances, they're characterised by a strong pain above the eye on the side.
Have you had a mouth guard made at the dentist to stop teeth grinding overnight?. It could help.
Also I don't think making a complaint against your Rheumy and GP will achieve much except added stress for you and it can damage any relationship you may have with medics in the future!. It's all computerised so will be well known!. Keep your fighting as you are in getting the referrals you need , only my opinion though!. I know they shouldn't get away with bad practice but you don't want to make things harder for yourself as you need such ongoing healthcare!.
Thank you for your reply and advice. Especially about migraine. Everything I have read says that you have visual disturbances and at least feel nauseous even if you aren't actually sick. That doesn't apply to me. My recent headaches are with pain developing behind one eye and ear.
I know what you mean about damaging future relationships with medical professionals. I guess I am hoping the lady GP on 29th Nov might consider backing me to at least be referred to my dermy in Cardiff who has helped me enormously this year if not refer me to a lupus specialist as well. Ha. I can dream. Otherwise I'm left in the care of the Rheumy and a GP with a specialist interest. Which I am not happy with at all.
I guess my main frustration at the moment is that the male GP woukdnet even try a referral for me. Just said no it wasn't worth trying. Well, to me it is worth it.
Feel like I'm hitting a brick wall, when I feel not all my issues are being dealt with.
I have just read some info from Barnclown's Lupus Info day that states that Triptans are good for lupus migraine. Just wondering if you have tried them?. Keep fighting because I do feel that we should have the doctor's we need and want to look after us properly as we're having to cope with such a difficult illness!. That GP's attitude is very negative and not what you need. Keep us posted and I'm sure you'll get there.X
Thank you! Yes, it's unfair for us to have to fight for our treatment etc, on top of fighting this chronic illness. But hey, I won't give up, it's not in my nature. Just sometimes you need a bit of respite and time to formulate your Plan B, Plan C etc.
I was prescribed Sumatriptan earlier this year. I found they didn't work when I had a terrible headache, crawling the walls with it. So I haven't used them since. I tend to use paracetamol, ibuprofen and then if those two don't work, I take 2 codeine. They work. But maybe I should give them another go.
Hello. I have this morning telephoned the NHS Neurosurgeon's secretary to ask if they had received a copy of the report of the brain MRI. It took a while to make her understand that this MRI had been ordered by the Rheumy to investigate the cause of the previous MRI's finding of a syrinx cyst. She said they wouldn't be sent anything like that. The Neuro would simply access the MRI of my brain at my appointment. So it sounds like he wont look at it until then. She confirmed that the waiting list is still 30 weeks. I asked to go on the cancellation list, she said that there isn't really one, as no-one cancels. But she will note that I can attend at short notice. I also pointed out that the Rheumy's referral letter was very short, no previous history etc and didn't tell them I have a diagnosis of lupus. She said that wouldn't make any difference to the grading of my referral, which is routine. I could ask GP to write with any further information if I wished. She was polite but matter of fact. That told me, eh.
I've recently returned from seeing a Neuro. They have a pretty quick eye so don't worry about the necessity of them having a look at your MRI before you get there. (& Yes - radiologists are not really qualified enough to diagnose neuro stuff) I'd bought a series of scans with me and it took her two seconds to spot some dull looking small white matter damage. (one bit of damage looked about a half cm.round) She pretty much repeated what was said to me 7 years ago - its natural and due to age. (48) I'm definitely not saying you shouldn't get it checked out, - just don't worry too much about it. MRI's have a habit of freaking lupus people out.
Also. I don't think MRI's can pick up on the microscopic inflammatory process of vasculitis, but I'm dead sure a modern MRI would have picked even the tiniest bit of vascular damage.
If they think the white matter spot was due to migraines ? (says a radiologist?) - and with all those headaches, I'm really hoping you've been checked for Antiphospholipid syndome. (Sticky blood). I have it for years and its controlled by 100mg of asprin a day. When I was a teenager- twenties - pre diagnosis - there were many times when I just wanted to shoot myself in the head for some relief from migraines that lasted for days on end as well as just living with chronic small headaches.
ps. Don't take iboprofen if you have kidney problems.
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