LUPUS UK
21,630 members17,151 posts

Opinions and advice required - Lupus of the Central Nervous System

Good evening.

This is my first post on this amazing site. I have just been diagnosed with lupus of the central nervous system with probable lesion on the spinal chord. It's taken a year to diagnose which I know is quick compared to others. I keep being told I'm very unique which is not what you want to hear. I have chronic pain down the right side of my body and have done for a year although in the past 3 weeks my left leg is starting to ache. I have been on a plethora of different meds which mostly have not done anything. I'm currently on hydrochloriquine, omeprazole, vitamin D, tarpentadol and nortryptaline and I'm still in pain. Saw my second neurologist this afternoon and he is ordering me a lumbar puncture and sensory tests as soon as possible as he believes all the meds are masking the problem which I believe too. I have had 3 MRIs which have come back clean but my blood has the lupus antibodies. I can't do anything physical as it makes the pain worse. Has anyone had any experience of this? Any advice greatly welcome. I'm exhausted and tired of telling people I'm in pain when people ask if I'm ok. Thoughts?

9 Replies
oldestnewest

I don't have any experience of this, but just wanted to say how sorry I am that you are suffering so much. I hope your docs come up with a workable plan. Hang in there.

2 likes
Reply

Thank you so much for just replying and being supportive. Like many people I read about on this forum, families find it difficult to comprehend what we go through so it's such comfort to have this forum to chat to like-minded people. I don't feel as alone now.

2 likes
Reply

Uggh, that sounds horrible. I guess you are still at a fairly early stage of treatment for the lupus, since most of the meds you mention are for symptom control? Maybe once they have done the acute bit around pain control, some more attention will be given to the underlying auto-immune side of things? I have no experience with CNS involvement, but I suppose many of us here feel a bit like lone wolves (heh), with one or more features that seem to be unique to us alone. Unfortunately, your body seems to have decided to go a step further and be that extra bit special! ;P

Keep in touch and I'm sure there will be some people with more understanding than me along in due course xxxx

2 likes
Reply

Hi ange726,

Welcome to the LUPUS UK community forum. I hope that you find it a helpful place for support and information.

I'm sorry to hear that the treatment is not currently helping. How long have you been taking them? Hydroxychloroquine can take 3-6 months before it starts to be effective, so hopefully you will see an improvement over time.

We have a blog article about pain management in lupus which may be of interest to you. You can read it at lupusuk.org.uk/pain-managem...

If you would like more information about lupus and LUPUS UK, you can request or download one of our free packs at lupusuk.org.uk/request-info...

1 like
Reply

Thank you for information. Been on hydrochloquine for 8 months. Hoping after lumbar puncture I can be given treatment that will help. As I said to the Dr yesterday, all I want is to be relatively pain free so I'm able to get my fitness back and stay in my job.

1 like
Reply

Hello.

I am finally getting back to catching up here, after having the children home for their 6 week summer holiday. It's impossible to do much here with them around.

I spotted your post and wanted to say that I have had concerns about my CNS type symptoms but that they are still being investigated.

I'll try and give you a run down of my issues.

I have SLE, background hypermobility, varicose veins, osteoarthritis of the hips, knees and back and various allergies.

I complained to my rheumy that I was experiencing increasing back pain, stiffness etc. It was getting to the point where if I stood still for 5 minutes I stiffened up and could not move, I was in agony. Etc. Not good at 41 years of age.

She referred me for an MRI of my spine. That picked up some osteoarthritis and other issues but she insisted nothing that would explain my symptoms. But the MRI also picked up a small syrinx cyst on my spinal cord and that required a further MRI and a referral to a Neurosurgeon for specialist opinion.

The second MRI confirmed that I did not have a chiari malformation which can be the cause of a syrinx, which was good news. They also said that actually I didn't have a syrinx cyst as such - it was too small to be considered a syrinx but rather I actually had 2 areas of inflammation in my spinal cord. So this whole thing confused me.

I have read about lupus myelitis and inflammation of the spinal cord.

I saw two different Neurosurgeons. One NHS and one private, as we used our private health care. The agreed that it was nothing to worry about. I was probably born with these areas of inflammation on my spinal cord. They were not growing, according to the 2 MRIs. And I had no worrying symptoms, like paralysis or tingling or bladder issues etc.

This second MRI had also covered my brain - to check for chiari malformation.

My brain MRI showed that I had small bilateral white frontal matter lesions - high signal.

Again my NHS Rheumy said coincidental finding, nothing to worry about, no further action required.

But to cut a very long story short - I am now waiting to see a new Rheumy, as for various reasons I got to the point that I lost all faith in her.

I saw Dr K at the London Bridge Lupus Centre in April this year, he amended my diagnosis from SCLE to SLE.

He said that my brain MRI needed repeating within 6-12 months of the first and that I needed to be referred to a Neurologist for an opinion on brain MRIs and my headaches etc and lupus.

My GP tells me that I show signs of Lupus with CNS inolvement.

But I think this is not the same as CNS Lupus?

Is it like everything with lupus, that there is a sliding scale. I am not sure my symptoms would warrant a diagnosis of CNS lupus. But I do have lupus with CNS symptoms. Does that make sense?

So, I have two areas of inflammation on my spine and white matter lesions on my brain. But no real answers at the current time.

The lesions on the brain can be migraine or lupus or signs of hemorrhage or signs of ischemic attacks. That's what I have read and researched anyway. Of course we are at increased risk of strokes with SLE anway and that is why I want to get to the bottom of it and have some proper answers.

I haven't been referred to a Neurologist at this time. (Depsite headaches since 12/13 and my diagnosis and findings and DR K saying I should be).

I am currently on hydroxychloroquine, MMF and mepacrine. This seems to be controlling my symptoms well. My back is much better, less stiffness etc but I still have to be careful with it. My headaches are less too. All round I feel this mix of meds is working for me.

I have posted about this. I'll attach the links, in case you are interested.

I would be interested to hear from you again and how you are getting on.

My very best wishes

Wendy

healthunlocked.com/lupusuk/...

healthunlocked.com/lupusuk/...

1 like
Reply

ange726 - Melba1 is posting re CNS lupus issues too.

I wasn't sure if you'd seen eachother posts.

Here is Melba1 posts in a link for you.

You may be able to help eachother.

healthunlocked.com/lupusuk/...

Best wishes

Wendy x

1 like
Reply

Hi Wendy

Thank you so much for your reply and for sending me a link. I had not seen it so will have a read and get in contact. I am having nerve and brain tests and a lumbar puncture on 4th October so hoping this will give the answers for me to start proper treatment and rehab. I'm confused as to whether I have lupus CNS with a lesion on spinal chord (no relation like you) or my lesion was caused by lupus! I can't complain about my Dr's as I know I'm seeing top experts and I trust them 100%.

Again like you, I'm 44 and my whole right side has been in chronic pain. I used to love running, spinning, circuits. Now I can't even do Pilates without my body punishing me for days after. So I'm hoping the lesion is separate so they can hopefully get rid of it so I can get back to my life!

It sounds like you have been through things much worse than me. I have had 3 MRIs of brain and spinal chord convinced it was an injury and one of my consultants had to show me the scans to prove to me there was nothing showing up, whatsoever. So the lesion on spinal chord diagnosis has come from Prof D'Cruz at Guy's hospital. I then saw my second neurologist who confirmed i had a strongly positive Lupus serology with a positive ANA, RNP & SM antibodies with raised complement . I have no idea what on earth any of that means! In total I'm seeing a rhumy consultant who specialised in lupus, a lupus Dr, a neurologist, a rhumy nurse, a pain specialist Dr and a pain specialist nurse. I'm exhausted just typing it!

I do think my tarpentadol is finally kicking in as my pain is now a 5 or 6 out of 10 for a lot of the day .

So whats the next step for you? My Dr keeps telling me not to google things but I can't help it!

It sounds weird but your MRI is showing up things but you don't think it's lupus CNS. My MRIs show up nothing! Isn't it frustrating how lupus is definitely the great imitator as I read in an article!

Are you able to do any exercise? My goal is to get back to cycling at least! I read that so many people having to give up work due to the sheer pain and exhaustion and to be honest it scares the crap out of me as its not even a conversation I'm willing to have! Dr's are so vague!

Please message me again if you get any further forward, or you just want to vent. I'll certainly message you once I get these tests done.

Keep smiling

Ange xxx

1 like
Reply

Thanks for your reply. I used to run half marathons before this disease kicked in. Pilates is the extent of my exercise now and walking, but both take their toll! So frustrating! It seems that your doctors are linking your lesion and your right sided pain. I have to say that as far as the inflammation on my spine is concerned, I have to agree with the doctors, I am asymptomatic. I have no paralysis or bowel or bladder issues, or anything they associate with a lesion. Have you read about lupus myelitis? That might be helpful to you. Prof D'Cruz has a great reputaiton, so you are in good hands. I have an appointment on 13th, so we'll swap notes afterwards. I am seeing a new NHS rheumy and am hoping she'll do the referral to Neurology so I can get some answers. Nice talking to you. Wendy

Reply

You may also like...