Forum

Lupus or MS or both?

Hi, everyone, I’m new here. I have been diagnosed with lupus in Sep 2012. At the time, amongst many other symptoms, I had few that were of a neurological nature: a tremor in my thumb that went on for few days and then disappeared, tingling/pins & needles in my left arm and full numbness in my arms and legs during the night. The rheumatologist put me on a trial of steroids and most of the symptoms improved. Together with blood tests, he decided on a lupus diagnosis and attributed the neurological symptoms to lupus. Since then I came off the steroids and am currently on an anti-malarial drug that is the standard of care in lupus. This drug has done wonders for my fatigue and many of the lupus symptoms. My hands are still going numb during the night, however. Nerve conduction test ruled out peripheral neuropathy and carpal tunnel syndrome and neck MRI showed mild spondylitis. Lupus specialist found no reason to believe that I could have CNS lupus on the basis of the absence of seizures, etc and did not think I should be referred to a neurologist. Few months ago I went abroad and whilst there my left eye felt like it had a film over it that I couldn’t clear. On my return home I checked it with the ophtalmologist who didn’t see anything untoward. This symptom went away but keeps coming back every now and then and goes away on its own volition. Then both in December 2012 and March 2013 I had episodes where my skin felt as if it was pricked by fine needles. The rheumatologist thought it might be a lupus flare and prescribed steroids. The symptoms went away after the third day. For the past few days my heels have been very painful and my feet had pins & needles. Yesterday and today the pins & needles moved up to my lower legs and felt as if tightened by a band. To say I’m concerned is an understatement. I was just getting my head around having lupus, now it seems that I have to consider MS too. More specialists, more tests, more uncertainty, more desperation. The problem I’m having is that my GP is reluctant to believe anything is wrong with me. It took him 2 years of extensive tests for him to send me to a rheumatologist and finally get the lupus diagnosis. Now I’m going with these concerns, he will think I’m seeking attention! But I am very worried - from what I’m reading on this site and online, the symptoms I have suggest MS. My vit levels are normal, by the way. Any suggestions as to how I can approach my GP to convince him I need to investigate this further? Are any of you suffering from both MS and Lupus and if so, how do you ‘allocate’ the symptoms between them? Thank you for your help.

I forgot to say that my cardiologist hearing me talking about the numbness in my arm, sent me for a brain MRI in Jan 2012 but he said that came back normal. The lupus specialist I saw in Dec 2012 who didn’t think I need to be referred to a neurologist said that there is no point having another MRI so soon (11 months!) after the first one.

Hello and welcome :slight_smile:

I know that it is possible to have both lupus and MS (and I’m pretty sure that at least one person on here has both), but it’s very rare and so I can imagine that a GP who dragged their feet about lupus is going to be at least as slow about MS too :frowning:

Tbh, I really don’t know enough about lupus to know what is and what isn’t normal, but if your newer symptoms aren’t consistent, then I can’t see why you shouldn’t be referred to a neurologist. So I guess that would be my advice: make a list of the symptoms that you believe are inconsistent with lupus, along with when and how long they have presented for, and then ask your GP to explain them. Assuming that they can’t, they should really refer you to someone who can.

As far as the MRI goes, whether or not it was “so soon” depends entirely on what symptoms had occurred before and after that point. If, for example, it were MS and you had had attacks after that point, it would be entirely reasonable to assume that there would be new lesions.

I should say that some of your symptoms don’t really seem to fit with MS though, e.g. MS sensory symptoms don’t come on only at night, but the only way of knowing for sure is to get it all properly checked out. And if your GP won’t play ball, then it’s probably time to find one who is more supportive!

Karen x

Hello and welcome, I have Lupus (sle) and spms. It is very hard to tell which is giving you the pain as they are very similar. Lupus you get the rash on your face, mouth ulcers, aching joints, but it does depend on which type of Lupus you have got. Ms is much the same except for walking difficulties, and leg pain, not joints., I would suggest you visit your doc’ and ask to be referred to a neuro and be assertive but not rude. It took Quite a while for both of my dg to be confirmed so don’t give up. Make a list of your symptoms for your doc’ and another one for the neuro. Hth. Janet X

Thank you Karen and Janet for taking the time to respond. I will make a differentiated list of symptoms and try and convince the GP to refer me and then be prepared for my neurologist appointment. It is shocking that we have to do all the research about the symptoms we have, then the likely diseases that could cause them and then construct a good argument for the doctor to believe us and take action. The medical policy in this country is very reactive and “wait and see” by comparison to the rest of Europe that is more proactive. Having said that, both MS and Lupus are autoimmune diseases that don’t manifest themselves properly until very far advanced, so sadly, one has to wait and see for a while before taking any steps towards diagnosis and treatment. Thank you again, I will let you know how I got on.

Please do, and if I can help just pm me. Good luck with your gp. Janet x

Hi Dan I have had Ms for over 20 years and am now in the process of testing for lupus. I’ve been off work for some 2 months now and have been insisting that my MS is not to blame for my current ill health. Drs have always said it’s the MS and I have had to be quite frank and tell them “I know my body and MS is not to blame”. They have now taken on my comments and have concluded that lupus is to blame, although I haven’t had a full diagnosis. I fully understand your predicament and would urge you to push for further examination and tests. It may take a while but will pay off in the long term and you will get some answers. Good luck and if wanna chat pls get in touch. All the best Sangita

Hi , my MRI mention I had approximately 10 focal T2 and flair hyperintensities in the subcortical cerebral white matter which are non specific? What does that mean do I have ms ? :slight_smile: I have lupus sle

I am confused by this thread. It seems to be contradicting what I have been told by my neurologist. He tested me for lupus, my understanding was that a blood test I had would rule it out or in. & if ruled out the diagnosis was ms. I was also told my Mri results, which showed legions could have pointed to either. The blood test showed that it was not lupus & my LP confirmed ms. I am now questioning if what I have been told is correct !

Hi Sarah , did you have a brain MRI ? Did they see white matter on scan ? I have lupus my Anna and anti DNA blood test came back postitive but my MRI came back with white matter so confused

Hi have you got ms ? Did they do more test to find out anything ?

Diagnosed with MS over 20years ago, with an MRI and spinal tap, and after 3 years of fighting with doctors that something else was wrong, in Feb 2016 after being tested for everything under the sun my blood work came back positive for lupus.

My late Mum had MS and was diagnosed in 1960 she had her first big relapse in 1982. Reading about how difficult it is to diagnose I wonder how they managed to diagnose it back then. All I know was the original diagnosis was Disseminated sclerosis and it started when she had arm pain. After her relapse she couldn’t bear her knee to be touched. I still miss her after 25 years.