Has anyone run into this before, cause I haven't...but gosh it fits with my experience (way before my version of lupus was recognised & systemically treated, the NHS was testing me for MS):
MS is sometimes described as "lupus of the myelin sheath" which means that unlike MS, lupus can attack anywhere, including giving MS symptoms, especially if someone also has the antiphospholipid antibody (Hughes) syndrome.
I ran into this recently on another lupus forum...am curious whether others have heard this before?
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Barnclown
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Yes. I've been tested over and over for MS. A neurologist once told me I had MS. I have an antibody called antimyelin IGG antibody, which is, from what I've read also found in MS, and is also a lesser known antiphospholipid antibody. I have alot of neuro symptoms, but not many other antibodies in the "positive range." I do had on and off high sed rate and high CRP (general markers of inflammation.) My neuro symptoms seem to be brought on by sunlight. And then I have the red cheeks, photosensitive rash, arthalgias, yada, yada. In the US they seemed really confused by me. Sometimes they just write me off as a wacko, other times I do get treated and the lupus treatments work-plaquinil, methotrexate and prednisone. This has been going on for almost 40 years!. My last diagnosis was lupus like UCTD.
I have been told that Lupus is the great imitator and I was tested for MS when I had neurological symptoms first showing. They do this first in case and then if negative but symptoms persist then they know it's Lupus causing it. Hope I've helped ?X
Yes, thanks, you do help. And as much as I do not feel good about you going through this, I'm comforted by your kind empathy & explanation...the voice of experience!
I just do feel sad when I think the nhs considered my symptoms significant enough for MS testing, and when the tests came in neg, they just shrugged and left me to cope....and I was so cowed & my health so poorly back then (mid 1990s) that I just kept calm & carried on...I wasn't up to the tough business of engaging with my drs at that point, and complementary therapists were happy to take my cash...meanwhile I lifestyle managed while my neuro cerebral symptoms persisted & progressed....my version of lupus wasn't recognised until 2011, when lupus meds first began to damp down these very symptoms...so now I'm getting some life back: YES!
I feel very sad for you that you paid such a price for your health because you weren't well enough to push doctors after having negative MS tests but were still having symptoms that worsened!. Thank goodness you are having a life now thanks to Myco, so deserved!X
Yes, thanks misty, i tell myself this too....everyday: and I'm making the most of this "good spell" while it's happening.
And my honest feeling is that back then I was too poorly to push the drs, but also I was too isolated & anxious & cowed due to Drs insisting there was "nothing to worry about". Thanks to the support & info here on forum & from lupus UK generally , & the solidarity here, i hope all of us are less likely to feel that browbeaten, isolated & anxious....
My GP was concerned last year when I was presenting with MS symptoms. I was deficient in vit B12 and self supplemented and those symptoms have diminished to a degree though not completely. My GP was asked by rheumatology to give me injections but the Endo insisted that my levels had raised (didn't bother asking if I had supplemented). I am so glad I did. Another example of not treating a person holistically.
I finally did get my B12 level tested again this year. the result was normal. But I still take a daily B12 supplement. Maybe that's one of the reasons my level was normal. My husband has monthly B12 injections at our surgery due to the effects of decades with crohns...he is v strong & fit, with no sinister neurological symptoms....
Ah ha: will ask my drs about B6 now! I have been taking a high potency B complex supplement daily all this time + eating a diet that is hopefully giving me good B6...although who knows how well I'm absorbing all this Vit B. So: many thanks, misty xo
Sounds to me like you've got B6 well covered with your diet and supplements!. Your such a good self-manager, inspiring others on Forum to do the same.X
I am waiting to hear official links that people suffering MS are all deficient in a range of vitamins and minerals maybe starting with D3.
D3, or the sunshine vitamin, cos body can make it if you spend time in the sun, but ability decreases with age, also seems to have an effect on staving off infections and potentially having a beneficial effect in relation to blood clotting.
I find this interesting as i read that people are at greater risk of blood clots in winter months, maybe when less sun is available????
Slap on the sunscreen though cos sun is bad, right?
Yes, thanks, i'm interested in this sort of angle too. And even with strong sunscreen i'm reactive....
Back in 2003 my pain consultant got me onto antiinflammation diet & supplements including v high vit D3 & omegas. The diet really has helped me, and everything i read about this sort of supplement regime encourages me to keep it up...and my gp, consultants & pharmacist have all okayed it (plus checked for contraindications when I started on lupus meds 4 years ago etc). Quite a few of us on forum seem to be having a go at this approach....I think I remember you posting about it....you're benefitting too?
Hi barnclown I have both sle and ms not very pleasant but liveable lupus meds work with ms but ms meds don't go with lupus this is quite rare and some horrible symptoms take care g
Am very sorry you are having to manage such a complex situation. But it's so important you're here sharing your knowledge & experience. Thank you so much for this reply which is v helpful (exactly the sort of solid knowledge & pithy detail I am hoping for), farmerfester, and take care xo
Yes, CNS lupus has a lot of similarities with MS - both impact the brain and the spinal cord. But they can be differentiated - for example MRI of the brain that shows leisions of the grey matter in a patchy formation is more likely to be due to lupus rather than MS, as lesions caused by MS appear radially along the white matter tracts. Lumbar puncture test results can also differentiate between the two due to the presence of specific autoantibodies initiated by lupus.
And so it goes on. I'm no doctor but from I can see CNS lupus can be far more extensive in reach than MS - think only of inflammation if the blood vessels and the brain to get a feel for the complexity of symptoms that lupus could cause.
MS symptoms are well defined and although medication tends to delay the progression of the disease, I get the feel that the progression happens in a more steady fashion than with lupus, which as we know can evolve over time into all kind of complications.
In your case, as you've been assessed for MS some time ago and the symptoms you had had not evolved into a progressive disability, I'd say your doctors' assessment still stands. although steroid treatment is used in MS, you've only taken it in small doses to make a difference if you would have had MS. Mycophenolate is sometimes used in MS but it isn't yet clear whether it is always effective to stop then progression.
Even without a diagnosis of CNS lupus, many of us have neuro symptoms but that again doesn't necessarily mean MS.
To have both must be awful, I constantly hope that my lupus remains stable and that nothing else gets added to it. I sometimes get so paranoid about my environment being toxic to my immune system that I sometimes wish I could live in a non-contaminated world, maybe I'll move to Tibet, become a nun and live forever :).
Am hugely grateful for this tiptop clear concise reply comparing & contrasting MS & SLE!!!! hope you'll stay on this forum if/when you make that move to Tibet!!!!
My gp has me on D3 daily. Seems we can hardly get enough via diet with so much of our food being processed. Not to mention the sun is not our friend. It's the only vitamin I take or have ever taken, except for maternity vitamins. I do keep and take a probiotic, as years of steroids and immunosuppresents create a "Happy Place" for yeast (thrush).
Thanks & yes, my Drs have had me on high dose Vit D & probiotics for years...I'm sure this helping me.... E.g. I've never had yeast/candida/thrush problems. Take care & good luck
Hi I know this is a old post but I'm in the process of being tested for ms abd lupus I had a privert mri scan as I started to have some neurological problems mainly in my eye now muscle twitches jolting numbness ect
My mum passed away from chronic ms 3 months ago aged 47.
Hence the privert mri scan as it is almost impossible to get any one to liston to my symptoms as ms isn't considered hereditary.
My mri showed lesions on the brain in the supractinal part of the brain and I was told my a privert nerutolagist I have ms and sent to a ms specialist who disagrees and reckons possible lupus as the lesions are not in the typical area for ms.
I had a pet scan yesterday
Spinal tap this Monday and bloods and repeated mri booked for the 6th.
I was reading your posts I wondered how you all got on.
I have a lot of joint pain and muscle twitches I was very low on b12 but I've had injections for 3 years now it's high
My muscle twitches only started after being diagnosed with ms maybe it's stress but it hasn't gone away.
My eye twiches alot and swells under it cheeck looks puffy to.
I've had bad hip joint for years and change in the bone marrow now I have the same pain in my left shoulder arm ect.
It's hard to work out what symptoms match up with what.
I've always since I can remember being low in iron and vitamin d
I get a really dry throat an mouth eyes too according to the options.
Anyone advise would be really helpful I've searched everywhere
I also know someone who has ms and her daughter has lupus
Hello buckley. Sorry couldn’t reply sooner but am extra poorly at the mo so unable to be as active as i have been here. Am v much feeling for you and relating to your issues. (if you’ve read my HealthUnlocked profile info you’ll understand why)
Am v glad you’ve posted this reply here, and, after 7 years here, i feel fairly certain others will be interested too and give helpful replies if you copy this reply you’re giving me here and then paste it into a forum post so everyone can read it. The details you give will ring a bell with many prople here, i feel sure
You are right: it is v hard to figure out which of our signs & symptoms are due to lupus, and which to other conditions we have simultaneously. For insrance, we now know i am 65 have 3 primary conditions, all of which are very early onset in childhood: SLE, hEDS, PID. My collection of multisystem consultants call these my overlapping immune dysfunction & connective tissue disorder comorbidities...
It’s taken my consultants & me my whole lifetime to figure these 3 underlying primaries out, and also to diagnose the collection of secondary conditions i have developed , mostly mainly due to having these 3 primaries (sjogrens, small cessel vasculitis, raynauds, erythromelalgia, osteoporosis etc etc). So hang on in there, be as well informed & proactive as poss...and take good care of your self via lifestyle management...cause the diagnostic process takes time, as does figuring out which treatments can help you most. I my experience this is a prpcess of collaboration netween a patient & her/his medics...and Lupus Uk + this wonderful forum can help lots
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