So glad it's over. MRIs are bad enough but with the head they put this "cage" for want of a better word over your head and pad it out to stop you moving. I wouldn't say I'm claustrophobic but it's horrible.
Again the history is long but the first brain MRI last September (2016) discovered bilateral white matter lesions. I can't remember the exact terminology.
I was told by my then NHS Rheumy that nothing needed following up re this issue.
But it bothered me as I get CNS issues with my lupus and worsening headaches etc. Headache since 12/13 and never been referred to a specialist about them.
So in April Dr K at London Bridge read the report and listened to my lupus symptoms, he told me that he wanted the MRI repeated within 6-12 months and a referral to a Neurologist.
My GP took some convincing to get the MRI. No one has referred me to a Neurologist. So I will have the scan report in a few weeks but GP doesn't think she is qualified enough to interpret the results.
I have an appointment with my new NHS Rheumy on 13th September. I will be raising it then.
Ultimately I intend to see Dr K for a follow up in November, so can discuss it with him too.
I have found a great article - it's the best I've read and understood re the significance of these white matter lesions / hyperintensities or whatever they call them.
Interesting paper - do post news of your results etc. I have a first appointment with neurology in a fortnight, so I will post if anything useful comes from that x
It is isn't it. Yes, please let us know. This is an area I've struggled to get good answers on. x
As you know I've had the same experience exactly re white matter and one neuro saying it was okay and the rheumy last year saying could be Sjögren's brain involvement - so I had a second MRI last year - ugh I hated it! Just had to practice yoga breathing and try and zone out somehow. The guy who did it seemed rather concerned about me and it seemed to take forever but rheumy wrote saying that it hadn't progressed. If it had the symptoms of small vessel diseases progressing would be early Alzheimer's memory loss and confusion I was told - not neuro symptoms as such.
Thank you for replying. Only time will tell. According to this article these lesions can be inflammatory and transient - lupus - as opposed to vascular/signs of a haemorrhage / ischemic attack. I just hope that new NHS Rheumy does refer me to Neurologist without a further battle. If not Dr K will have to deal with it. I'm going to try to relax and enjoy the rest of the day - my birthday today - despite having a feeling of very hot ears and cheeks since the scan. X
Chuckling to myself. Couldn't believe it when appt letter came through the post but I didn't want to delay it any longer!!!! They asked me to confirm my date of birth this morning and the miserable nurses never commented! X
Thank you! I'll be raising a glass of non alcohol fizz later with my hubby and children. It will be a good one. We're lucky to be here to celebrate birthdays after all. 🎂🥂😀 x
An excellent article. Happy birthday. MRI isn't the best place to be for it. My results showed some white patches but the neurologist said that I had changes to my temporal lobe. This indicated either migraine or epilepsy. This fell in line with the migraine and faints I have. Nothing ever seems to be 100 % clear but since I was put on Topiramate things have improved. He said it also could be part of the Sjorgrens which was mentioned in your article. I look forward to hearing your results.
Thanks for replying and letting me know your "brain" story. I did note the sjogrens connection. Twitchy has that in common. But I don't. Just the SLE for me. I really want a neurologist's opinion, for my peace of mind. I don't think my symptoms are severe enough to have CNS Lupus. Rather I have Lupus with some CNS involvement & migraine. Wouldn't it be great to be able to separate these symptoms completely!!! But it's impossible . Thanks for your reply. x
I had a brain MRI years ago with my head pulsating in pain. I'm not claustrophobic but I was sure my head was literally going to explode whilst in there and I whiled away the time wondering about the mess ...
The neuros arrived at my bedside shortly afterwards telling me that the white matter pointed to MS but, as I had no symptoms of MS, I didn't need to worry! That was 27 years ago and I occasionally wonder if the lesions are still there but most likely they were the result of a meningitis-like reaction to penicillin.
I shall be interested to hear what they say. Enjoy the rest of your day x
Thank you for my birthday wishes. I had a lovely day in the end. x
This article is a comparison between lesions with lupus and MS. From my very basic understanding, the initial white matter lesions for MS and lupus are the same. But obviously MS always involves cognitive function deteriorating etc.
I had my first brain MRI last September (2016) to look for the cause of inflammation in my spine - they wanted to rule out a Chiari malformation. Luckily for me I didn't have the Chiari malformation.
My then NHS rheumy told me that the white matter lesions on that scan were "incidental findings" and needed no further investigation. But then she didn't really want to investigate anything for me, other than referring me to physio etc to get me off her back.
But this played on my mind. I have terrible headaches, of various types, brain fog, memory issues, lack of concentration and low mood, mood swings, I've suffered tendon involvement in my wrists and ankles and also hip bursitis, two areas of inflammation on my spine - they tell me that I was probably born that way - and then white matter lesions on my brain.
To me, I thought it might all be linked to lupus with CNS involvement and wanted it explored further, just in case I was right and it was serious. Then I had the battle with my health board for out of area referral and they refused etc.
When I went to London Bridge to see Dr K in April, I mentioned all this to him. He wanted the brain MRI repeated within 6-12 months for comparison and ordered some bloods. APS etc. they are all negative, I think, although no one has talked them through with me yet. Now I'll have the 2nd brain scan too. But no referral to a Neurologist to interpret it, along with my symptoms amd other findings.
I see a new NHS Rheumy on 13th September, which will be very interesting. If she refuses to refer me to a Neurologist, I will be very angry, but I am hoping to see Dr K again in November and will see what he says about it all.
My understanding from this article which is the best I have read so far when researching this issue of WM lesions, is that they can be transient - ie areas of inflammation caused by lupus and maybe are not permanent, or they can be small heamorhages and a sign of ischemic attacks or vascular disease. So I guess, although I am no way claiming to be an expert, that they should be taken seriously and monitored.
My guess is that my 2 MRIs will be compared, to see if the number of lesions has increased, whether they are bigger, or smaller or transient and disappeared. I really want some anwers and am particularly interested in that I had that terrible, long, headache Feb/March this year, very intense and pains down my neck and jaw etc - will this show any signs of migraine on the scan??
Do you suffer from any signs of central nervous system involvement with your lupus? Headaches, brain fog etc?
Hello lovely. Yes they did spoil me. I am very lucky. Although not a good start to my birthday, I was relieved to get another thing ticked off Dr K's treatment plan. Only a referral to a Neurologist left on it now - to interpret the blood tests he ordered me to have and the brain MRIs and my sysmptoms. Otherwise I have managed to get it all put into action. I will see him again hopefully in November. If Dr C refuses a referral to Neurology, at least I have the tests Dr K wanted, I can see what he thinks of it all and I can then weigh up the need/benefit of a private neurologist at that stage. Or make another complaint??? Ha ha. Fingers crossed Dr C surprises me. Looking forward to seeing you soon. Wendy x
Poor you - a brain MRI is not a great birthday present! I've had them too and they are not pleasant. Like twitchy I have learnt to distract myself but put myself in such a state of relaxation to counter the claustrophobia I was like a zombie for a few hours after!
That is a great article - thanks for sharing. I really hope you get some clear answers and treatment. My experience recently is that neurologists aren't very knowledgeable about lupus, I was admitted to hospital recently with CNS/PNS symptoms and had several different suggested (guessed?!) diagnosis in 2 days including vasculitis, fibromyalgia and chronic migraine. I then saw a senior rheumy consultant this week who said it is clearly CNS lupus and put me straight back on high dose steroids and started immunosuppressants. Feel much better on steroids!
Have you tried steroids to see if they work? I think that then points to am inflammatory process. The neuro told me that steroids wouldn't be working for my migraines and to immediately stop medication because it can make chronic migraines worse but the rheumy was then cross I'd stopped the steroids and I had a lecture on the danger of CNS lupus and importance of adhering to medication regimes! Difficult when you either aren't getting any answers like you or conflicting ones like me and I don't know about you but when I feel the lupus attacking this area I don't have the brainpower left to make my own decisions!
What are your neuro issues you get with your headaches? I can't see why you weren't referred to a neurologist if your rheumatologist said you should be?! It's a shame but sometimes you have to be pushy to get the answers you need to help you get better.
Let us know how you get on and glad you had a nice birthday (after the scan!)
Good luck Wendy for your brain MRI resukts. Glad it's being followed up and good idea to ask Rheumy about neurology referral. If he does it , it will be quicker. X
Hi, I was just reading this thread with interest and was wondering what your results were of the MRI, whether you got the Neurologist referral, what your new rhumi is like and how you are??!!
I have UCTD and chronic migraine. I got results of my 2nd MRI just before Xmas and it showed white matter lesions. It was requested by my Neurologist in the summer. The last MRI I had ( cerebral and full spine) was in 2016 and that was normal except from cervical spondylosis.
So this latest one (summer 2018) showed a few white matter lesions, possibly vascular in nature. He said they could be caused by (examples) migraine or CTD. He said I need a repeat MRI around March /April as they need monitoring.
I was abit alarmed and didn't ask any questions really. I'm seeing my Rheumatologist next week and I will talk to her about it.
Tomorrow I'm being assessed at home by someone from the memory clinic ( gp referral. ) I forgot (!) to mention cognitive function issues to my Neurologist and ofourse thought of it on my way home. So I will bring this up as well with my Rheumatologist.
I really don't know what to make of it all and it would be good to have someone to talk to. I'm 53 btw. Xx
I am now 44 and this was my post from last year. Happy to give you some more details and an update, if you think it might help you.
I was diagnosed with lupus in October/November 2013, (with the wrong type, SCLE and it took a long to get this correct diagnosis of SLE, systemic lupus).
I have suffered from so many symptoms due to my lupus, the list is long and varied but my current GP has been telling me that I have CNS involvement with my Lupus for some time (and an inflammatory bowel issue too).
I have to see a lupus doctor privately in London now, as I was discharged by my NHS Rheumatology department in 2017. The lupus doctor knows about my CNS symptoms and asked my GP to refer me to a Neurologist, but this has not happened and at my last NHS rheumy appointment, I asked for a referral and was point blank refused.
Now here we are, January 2019 and I have finally persuaded my medical insurance to pay for a Neurology review. They will not monitor a chronic condition and in the beginning, I was allowed 1 diagnostic appointment with a Rheumy and 2 with a dermy, nothing since. But I managed to get this Neuro appointment as a diagnostic appointment to access my level of CNS involvement, therefore it will be a one off, I am sure. So, I’m hoping to get an opinion on these CNS symptoms once and for all. Are they all relevant or not????
If you are like me, whether it’s good news or bad, I just want answers from someone who understands lupus and CNS involvement and I can trust to give me the correct diagnosis and information.
My lupus doctor from London has recommended this Neuro and it seems that he has a MD in TIA and stroke imaging. So hopefully he’ll be able to look at the MRI’s I have and assess them.
The symptoms that I think are connected are as follows:
•Headaches / Migraine / Cluster migraine / Ice pick headaches / Migraine with myalgia behind my eyes, ears and down my neck, facial pains around my jaw, tender scalp to touch, my headaches can be daily for weeks on end and my worst was over 6 weeks before I got it under control. This has recently changed in nature and now I can get the pains / shooting pains in my face, eyes, ears and neck with no “headache”. I have tried numerous pain relief over the years, both over the counter and prescribed by my GP. Migraleve and Sumatriptan most recently. Nothing stopped this pain until I started on the Ametriptyline in approx. September 2018.
•Memory problems, confusion, clumsiness, lack of concentration and impatience – I could not remember my own age and date of birth to work it out one day, I had to ask my children when they came in, I forget the names of people and objects – I have to describe what the kitchen utensil does for example and sometimes it is so bad that I give up talking completely as I cannot get my words out. My husband says that at times what I think I have said hasn’t come out right and I’ve made no sense what-so-ever. I also cannot complete simple maths tasks even with a calculator at times.
•Bilateral tiny frontal white matter high signal could be due to migraine. on my brain MRI and two areas of inflammation on my spinal cord/syrinx cyst (no chiari malformation);
•Muscle twitches in back and left leg mainly but have had right too - and lower right abdominal twitches and pain – actually visited doctors about this once but GP said no cause for concern. Twitches can be when walking, resting etc but I think mainly when in bed at night.
•Involuntary head jerks/twitches – Dr Kaul calls these titubation tremors. When they happen I feel like I have to fight against them to keep my head still.No one has ever told me that they are visible. But the twitches feel like my head is moving A very strange and worrying feeling;
•Wet/cold sensations in my legs and sometimes down my back. Wet sensation in/on legs – happened a few times in the car, looking everywhere for leak in car roof, or window open etc. but none, just my leg. Have thought I have spilt things on myself and no, again nothing there. Strange sensation.
•Hand shaking/tremors;
•Nausea, including extreme car sickness when flaring and balance issues;
•Dizziness.
The outcomes of my MRI’s have been as follows:
•Query over relevance of findings on MRI of the brain and spine. Incidental finding of a small syrinx cyst in the distal cord from upper border of T9 to the mid part of T11. No Chiari Malformation. Syrinx was “downgraded” to actually two areas of inflammation after second MRI of spine and told they were not progressing. Told I had probably been born like this this and none of my symptoms are related to these areas of inflammation. Told no connection with my SLE. These areas of inflammation have not continued to be monitored since then.
•MRI of brain x 2 – 26th September 2016 & 1st September 2017. Findings of “Bilateral tiny frontal white matter high signal could be due to migraine”. I was told the first one was to check for a Chiari malformation and the second was to see if there were any changes to the white matter high signal. Again, not monitored since and told of no clinical relevance.
Fortunately, my current treatment plan is working well.
I am now on 3g a day of MMF, 400mg a day of hydroxychloroquine, 50mg of Mepacrine 3 times per week and Ametriptyline 30mg every night.
The Ametriptyline was added last August and has made a huge difference. I no longer get the big, long headaches or the flashes of pain through my eyes and ears etc, I don’t get the facial pains etc. Or if I do, they are so brief that it’s not a problem. I am virtually pain free. I am not worried about what time of day these symptoms will strike or how long they’ll last. I haven’t had a big flare for a while. Fingers crossed! I still get fatigued and have the odd twinge in my wrists or my hip, but I am the best I have been for a long time.
I hope I have helped a little.
When I get my Neurology report, I’ll post so that you can see the findings of this Neuro re my white matter etc.
I haven't had an MRI of my brain since September 2017 but am hoping to get this re-done soon and see a neurologist that has been recommended to me. Fingers crossed that we both get some honest answers very soon. Stay in touch. x
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Help MRI referral and scared 😢
2nd PIP Tribunal on Wednesday 
Uncertain what is causing my problems. Could it be lupus?
How does lupus affect the nervous system?
