Hi everyone, any of you who have been to see Prof D’Cruz, could you tell me if deals with neuropathies? Peripheral, autonomic and CNS. I need help and my Rheumatologist is more specialised in RA, there’s not that many Lupus patients with overlaps or even without? Would I have to go private? How do I get a referral? Basically I need someone who specialises specifically in neuropathies. I’m in Belfast but willing to travel. I have a neuro too who treats the CNS part, reluctantly.
Many thanks everyone,
Terri X
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I can see why you are unclear where to turn. You have a lot going on that involves doctors with different expertise. I am not a patient of Professor d ‘ Cruz - though he certainly seems like an excellent doctor - but I do have autonomic dysfunction and low level CNS disease so I may be able to think this through with you.
Generally, peripheral neuropathy and autonomic neuropathy are treated by neurologists. You also have CNS involvement, which is usually handled by a neurologist too. The problem is these are highly specialized areas. An autonomic center may be best for your autonomic neuropathy but a good neurologist interested in peripheral neuropathy would be important for that issue. CNS involvement is
complicated. It is hard to find neurologists who know a lot about brain autoimmunity.
If I were you, I would go to someone like Professor d’ Cruz and allow them to evaluate you and make a plan. He is a lupus and APS specialist, which means he has seen a lot of patients with your complications. But it is likely he would want to involve experts in your care.
Why is your neurologist reluctant to treat you?
Hope you are able to move forward with your treatment. Good luck.
Thank you Kay, I was hoping you’d reply. My neurologist was changed recently and doesn’t seem to know much, she specialises in MS. I am the only patient with CNS lupus (I’m in Ireland actually the north so small population), she treats me with low level anti seizure meds which really help, but I didn’t know neurologists were the specialists in all neuropathies. I had hoped the pain clinic could recommend a plasma exchange or something ( I’m not sure if that’s the correct procedure), but I don’t think they’re equipped for us. Kay, do you think it’s worth going to see the Prof? I have all my treatments In hand , I receive rituximab infusions which are ok (and protect my organs) but don’t touch the neuropathies, and they are unbearable. I won’t go into detail as I know you’re familiar with the symptoms, but I’m finding it very difficult to cope. Thank you for replying, any advice is very very welcome.
If you are on Rituximab, they are not taking any of your symptoms lightly. But the autonomic issues are rare, so there is probably no clear guideline. They go on expert opinion. When autonomic dysfunction becomes severe, my neurologist did say IVIG is very effective.
Yes, I think it is worth seeing an academic doctor like Professor d Cruz for a second opinion. It is always possible he could have access to a trial too.
Feel free to message me if you need advice on managing with autonomic dysfunction.
Many many thanks Kay , what is IVIG? The autonomic is horrendous, bladder, mobility, difficulty swallowing, the whole sheebang. CNS is more or less under control, I get small seizures, they thought at one time they were a series of tia’s, but my new neurologist hasn’t been very helpful. I’d take any advise on autonomic Kay, hope you are well also. Tx
Sorry, last thing, I haven’t produced sweat for years now due to autonomic neuropathies. I’m tormented by the symptoms which inevitably provoke a full blown flare , and then dastardly steroids are upped. TX
It sounds like your autonomic issues are serious. I wish I could help more there but I am affected by orthostatic hypotension and hyper-responsive réactions than those you are describing. The autonomic nervous system controls a lot of very important things. That could actually be in your favor. I don’t know how it works in the UK but in the US, if a drug is not approved for a condition but the patient is seriously ill, the doctor can advocate for use of the drug « off-label. »
I think your doctors will actually be pleased for you to get a second opinion. Good doctors are also humble. They have clearly fought to get the Rituximab for you - probably no small thing with the NHS and want to give you the best care - but a second look by someone who sees many more patients like you would be welcome.
I do think it is very encouraging that the Rituximab has controlled your CNS symptoms. That was their hope, and it happened. Try to hang on to that.
As for the autonomic dysfunction, let Professor d Cruz decide who to send you to. There may be a special unit in his hospital or in another hospital.
You are a challenging patient! This is what the big academic centers do best. I think you will feel better getting your current treatment approach confirmed and possibly a new strategy that might help with certain problems.
MaggieLee has given great advice. Send all information - brain MRIs, autonomic studies, EEGs - to Professor d Cruz far in advance.
Thank you Kay, I’ll phone my rheumatologist’s secretary on Monday . The CNS symptoms are mostly being controlled by an anti seizure drug but I do think the rituximab has helped stammering etc. It’s so hard to know. I know my Rheumatologist is trying to protect my organs for which I’m very grateful, but the neuropathies are pushing me. I’m not sure if they can make the condition worse when untreated but my guess is mt team think as long as the serious business of organ involvement (and slowing down kidney damage)is under control, then the neuropathies are the ‘least of my worries’. This is wrong, they are all consuming, almost as bad as a full blown flare. I’ll read over all the advice given to me here and make a start on seeing Prof D’Cruz. Many thanks Kay, I hope you are ok.
Actually, IVIG looks promising for autoimmune neuropathy. The problem is getting it. Very limited. But it is certainly worth seeing if Professor d Cruz knows of a trial you could be in and generally getting his opinion. I don’t hear that your doctors have ignored the neuropathy. There is just not much available to address it.
You are not betraying your doctors at all. They would do the same for their family members, and will likely help expedite a referral. You will be respected, not judged.
Thanks Kay, I’m going to get the all rolling tomorrow (Monday ), armed with everyone’s advice. I feel much more positive. I’ll keep everyone informed and hopefully be able to help someone else. Txxx
Terry - you have already taught us and are teaching your doctors. « Clinically severe CNS involvement in active SLE is rare. » The jury is still out on Rituximab - some lupus patients responding well and some not - so Professor d’ Cruz and his colleagues will likely be very interesting in how you are doing. And they will work with other specialists to try to help you.
I know your doctors in Belfast will support you all the way in getting this second opinion.
Neuropathic pain is all consuming I know. However the most painful type is usually small fibre neuropathy/SFN - and the amount of pain doesn’t usually tarry with the amount of damage done. It’s the loss of sensation which indicates that damage has occurred - and I believe that while pain is flaring the nerves can still regenerate. Mine is pretty advanced now and my skin lacks sensation in a patchy way everywhere. I have overlapping Raynaud’s and Erythromelagia and I either can’t sweat at all for long periods - or else randomly sweat profusely. Neither extreme is ideal!
The usual treatments are the anti seizure drugs I think you’re already on at a low dose? If you have SFN in the UK you would be very unlikely to be offered IViG because it’s kept for patients with GBS and other acute onset inflammatory neuropathies.
I am at the mostly numb, tingling end of SFN now apart from my lips and my finger tips and pads. In my case it’s probably done it’s damage already and has apparently stabilised to an extent so I’m gradually adapting my balance etc as I am used to it. I do know that when it’s bad, it’s a pain that takes over everything else - so I do understand and relate to your predicament. X
You describe exactly what I experience with neuropathy in legs and feet, hands, face at times, along with disabling cramps in legs. I have not sweat for 4 years and feel like I have an Internal combustion engine. Good to rant here!
Yes I stopped sweating entirely for a few years but now I sweat for Scotland some nights and in the days in summer with Erythromelagia. And it’s not normal sweat - it’s my face and hair and not after exertion - just randomly!
When I told GP she asked about menopause but I had an early one 10 years ago so she ran a 24 hour urine test on me - can’t recall what she was looking for though.
It’s the two extremes now that are so annoying - but my feet and arm pits never sweat anymore - mainly just face and chest randomly and often at night.
I have severe CNS APS and neuropathy , and I was a patient of prof. Natasha Jordan at the London lupus Centre.
As of Dec 6 2018 she had her last clinic there, and her last patient ( which was me.) she’s only continuing her NHS practice.
She is recommending I continue with Prof. D’ Cruz . She felt he was the proper fit for me. I agreed, so she handed my file over.
I also have seizures, and am in an anti epileptic medication twice daily.
I’m also on Rituximab infusions.
Professor Paul Holmes is the Professor in London that is extremely knowledgeable about lupus and APS and their common complications such as neuropathies.
Prof. Paul Holmes does see some patients privately at the shard. His private secretary can be reached, and Alison or Sally at the London lupus Centre will have her contact. ( if I remember correctly her name is Helen.)
I would absolutely see prof D’Cruz first. He would likely be instrumental in expediting your referral to Professor D’Cruz.
Hi Kelly, thank you for replying, can I ask do you suffer from the other neuropathies? Have they suggested a treatment? I had read something about plasma exchange but there’s a massive possibility I’m wrong, as you and Kay know, memory and finding correct words/phrases can be tricky. Oh yes I stammer too, and my sense of smell is messed up. Terri X
Hi Terri. I have CNS Lupus and was diagnosed around 3yrs ago. I was referred to Prof D'Cruz to get a second opinion on my diagnosis, which he did. He is incredible and referred me to a neurologist etc. He is definitely worth seeing, if you can get a referral.
Thank you Angie, is it a private appointment or nhs referral do you know? What kind of symptoms does the CNS cause you? Mine are seizures (contained), sense of smell mixed up, tremors, and struggling to find right word and stammers.
I have seen Prof. D'Cruz, it helps if you do see him in London to send him (or secretary) recent tests to review (saves time & money) and a summary of diagnosises, treatments & current meds etc.
Here is the website to see him privately (which I did, as I could not get referred out of area):
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