I know I have been diagnosed with SLE but how can I be sure it's not MS as the symptoms are very similar?
I've thought about this previously as I want to be treated for the correct autoimmune diseases. But then a friend whose a nurse asked me today if I'd been tested for MS. As I understand it from research online, only an MRI can give a conclusive answer.
I'm seeing my Rheumy Thursday, giving her a list of my symptoms, and asking her straight what my prognosis is for the future and can she guarantee I have lupus and request an MRI even though I really don't want one!
My ANA was positive and I had a weak positive for Myosotis so think I'm going to request the myosotis again to see what the result is.
Is there an antibody for MS? Has anyone else wondered if they do have lupus, CTD or if it's MS? And have you been tested or had an MRI?
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MissFG
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Hi I have both if you want to be sure you will need to get referred to a neurologist who will
Look at at your history examine you then possible mri bloods lumber puncture etc .
Lumbar puncture is standard for diagnosing MS. I had one because Sjögren's also mimics MS and vice versa. It showed paired oligloclonal bands, which ruled out MS, but confirmed that a systemic process was occurring i.e. Lupus, Sjögren's, Vasculitis.
A brain MRI has been done twice and shows white matter/ small vessel disease, attributed now to my Sjögren's. I do feel easier for knowing this I must say. Worth asking to be referred to a neurologist for further investigations. If you have neurological involvement with Lupus then you should see one anyway and they would work with your rheumatolgist.
Thanks I just have a lot of numbness in my hands and legs from the knees down. My feet sometimes feel so ice cold frozen from the numbness it worries me but the specialist nurse says taking the gabapentin would help however I'm concerned as to how bad it could get rather than just taking pain killers. I also have a lump at the top of my neck on my spine and my neck hurts initially I thought this was just muscle weakness now I'm not so sure.
I've had nerve conduction and muscles tests last October which they said were ok which was undertaken by neurology but I've had no further tests or a referral.
Should I speak with my Rheumy and raise my concerns and ask for a referral or further tests? Or am I worrying about nothing and these are just lupus symptoms thanks
I can't advise on whether your concerns are justified or not because we aren't able to give medical advice even if I knew.
I can only relay my own experiences - which have been that I was initially diagnosed with RA and put on aggressive treatments. I never felt right about my diagnosis and was worried that I had MS or Vasculitis because of very intense neuropathic pain everywhere and similar numbness to what you describe. Having had Sjögren's properly confirmed by lip biopsy last year has really helped give me confidence in my own instincts.
But it's a delicate balance between being in denial (as many with RA and my rheumy assumed I was) and having a hunch that a diagnosis is wrong. My diagnosis of RA was incorrect but it wasn't far off at all so the rheumy can be entirely forgiven
For instance I've had a worry that I might have Scleroderma for a few years now and the pattern of my ANA is suggestive of this or Myositis. And I think I do have some overlap but Scleroderma has been ruled out recently . At what point I can fully settle to my actual diagnosis of primary Sjögren's is anyone's guess. Symptom overlap can be so great between autoimmune diseases and I'm a born worrier.
But slowly I'm learning to accept that each of us Autoimmuners will have their own unique mix and no doctor can predict where the mix might go. Rheumatology and neurology are very inexact areas or science unfortunately so at some point we have to learn to trust our doctors just as they have to learn to trust us.
I think you should talk this through with your GP first because they can refer you to neurology - mine did. X
I always trust my gut instinct however it feels like the blind leading the blind! I have a weak positive for myositis so need to ask about that too. I'll do some research today on MS and it's symptoms and see if the numbness and muscle weakness/pain are an indication that should be investigated. But yes trust in our doctors is a must but it doesn't mean we can't research and ask even request further investigations to ensure we get the right treatment
I didn't say it's important to have blind faith in doctors!
In fact I believe it is absolutely essential to be reasonably sceptical and ask questions when we don't understand things. I meant to say that, if we are lucky, we can build up a relationship with our medical team which involves a degree of mutual trust and team work. But it usually takes time, effort and give and take. Just because someone has a medical degree it doesn't mean they will be right in their assessment. But years of seeing and learning about the various rheumatic diseases on top of a good medical training, means that their instincts can sometimes be more reliable than our own i.e. they can unravel our symptoms and signs and make a judgement about what is wrong, better than we can.
I have had personal experience of having been right in my instincts all along, despite being told by doctors that I was barking up the wrong tree. But then again sometimes I'm so coloured by my symptoms and feeling of unwellness that I can't always see the wood for the trees. We are all fallible, including doctors.
I have a question, like MissFG , my Lupus/UCTD diagnoses is inconclusive, I am B12 deficient, but also have strong features of Sjogrens, is there a simple way of setting this down on paper so that I can make enough sense of it , to request referral to a Neurologist?
You could print this off and give it to your GP perhaps? But the best bet would be to get a confirmed diagnosis of Sjogren's and this should lead to a neurology referral. hopkinssjogrens.org/disease...
It really depends on your GP and your rheumatologist. Every NHS area has different proticols re specialist referrals and GPs are increasingly reluctant to refer unless they are sure. I had to pester mine for a year to get an initial neurology referral a few years ago. They just all kept telling me it was RA or med related and I would eventually accept this awful parasthesia and disequillibrium.
It took five years to get clarification re Sjogren's and many many powerful meds with disastrous allergic reactions! I now refuse to try any of their drugs for nerve pain relief because a) I can't tolerate them and b) I want to know if nerve damage is progressing or not. My neuro gets a bit exasperated by this but that's her problem! X
Thank you for this link Twitchy, sorry my reply has taken a while, I had to give in and see the Doc about my eyes, she thinks they are infected this time so has given AB drops.
Vision is a little clearer this morning so fingers crossed x
I haven't read it all because looking at my screen for to long is painful, so will print it off later.
Was finally given my Bow ink yesterday so hope that has an impact too, usually takes about 24 hrs to settle in, have to see her again in a couple of weeks so think I will broach the neurology referral with her then, she says she wants to look at every possible angle for the neuropathy and we've ruled out diabetes because my sugars are really well controlled, even through the steroids, I've worked hard with my diabetes nurse to stay on top of this.
I managed to get all my blood results printed off for me in the surgery yesterday, I have the hospital ones every month, when I have my Cyclo. So will have a good look at those as well
Grrrrreat discussion MissFG...you've got sime valuable replies here 👏👏👏👏
Back in the early 1990s, my gp referred me to neurology for MS investigations due to my persistent numbness, foot drop etc. Neurology' tests were neg....the consultant never even saw me to discuss what might be underlying my signs & symptoms...and my gp just shrugged his shoulders
I wish I'd had this sort of forum beside me way back then...I'd have known how to pursue convincing diagnosis...but, hey, I'd never even hear of lupus & immune dysfunction or connective tissue disorders. ...and the NHS convinced me I could cope with the multisystem degeneration & I should cope because it was all "normal"....and this was WAY before I was able to go online the way we do now
Then in 2011 a brilliant rheumy figured out my underlying SLE....and it turned out I'd been diagnosed as an infant (long story): 💡💡💡💡
All in all, the NHS took 40-something years to figure out what was underlying all my persistent health stuff 🤷♀️
Wishing you every best wish....hoping you'll let us know how things go
With regards to the neuropathy, does anyone have what feels like neuropathy in your chest? Many times comes with episodes of RLS but not always. But wondering if this helps narrow down which condition might be causing some issues? I did not see this specifically in the Sjogren's article. MS can have shocks when you bend your head to your chest but this is more like a neuropathy that goes across the entire chest.
I know there was a discussion regarding vitamin deficiency recently, but specifically low levels of B1 and B2 vitamins are being associated with neurological symptoms and how your body utilizes B6 and B12, so MissFG you may want to ask about those as well. Here is one article about B1 (thiamine)
Thank you for any more information about neuropathy you all experience. I hope all of these posts help with a good discussion with your doctor, MissFG.
To answer whether anyone gets neuropathy in chest - I wonder if you mean oesophageal spasms, reflux or gastritis perhaps? I get all three along with my small fibre neuropathy and Raynauds and am sure they are all interconnected for me. Could this be same type of sensation as you describe? - if so could it be autonomic dysfunction maybe? I do also get horrible chest spasms if I push my neck down towards my knees i.e bend down from sitting position but I've had this problem for a long time and all but given up trying to figure it out?!
Yes that's true Clare re optical neuritis. But some with Sjögren's get this too apparently - Cuttysark from this HU for example. It also explains this on the John Hopkins link I attached earlier.
So I don't think optical neurotis is 100% conclusive to diagnose MS. I'm afraid the lumbar puncture is usually the most decisive way of differentiating between Lupus or Sjögren's and MS. And a few very unlucky people have both.
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