Have just been to see the Rheumatologist last week after a couple of months of increasingly severe neurological symptoms.
He thinks I have Sjogrens, maybe Lupus and Primary Biliary Cirrhosis and am on prednisalone injections and oral steroids at present. I am to start Mycophenolate in July after the last injection wears off.I am seronegative and bloods always normal so I am grateful to at least have a Rheumy who will treat me.
For years, as well as all the expected symptoms of those diseaese, I have totally dire muscle weakness in heat of any kind. I can't go near a spa and even a mildly heated swimming pool starts my legs trembling within minutes so I need help to get out and dressed. Once I am cool again the strength returns. Last week I had an alarming bout of eye problems with sudden flashing lights even in the dark at night and appearance of floaters and very blurred vision in one eye.I saw optician and was checked for retinal detachment but was all clear.
Now if I become even slightly over heated the blurred vision returns also.
When I explained this to my Rheumatologist he felt it had nothing to do with the suspected Lupus and I must return to Neurology at the Southern General whom I had attended for some years with disc problems resulting in an op for fusion of two neck discs.
This seems to have nothing to do with my neck op and the heat problem has been there for years but is now worsening. The eye problem is more recent but very persistent and affecting me most days , the blurring making me feel a bit dizzy and disorientated.
I had three brain scans looking for MS six years ago, before the autoimune diseases became so obvious and they were all clear of any lesions.
I know these particular symptoms are very suggestive of MS but since that was ruled out with the earlier scan , I wondered if Lupus or Sjogrens could cause something similar.
Be very interested to hear if anyone had anything like this ? Or even any other type of neurological symptoms with Lupus or Sjogrens ?
I just feel this must be related somehow to the rest?
It is all so incredibly complex isn't it, no wonder we struggle to cope with it all when the medics don't know the answers either! C x
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cuttysark
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I have Sjogrens Syndrome with a possible lupus crossover and whilst luckily I have not had significant neurological complications myself, I have come across a lot of 'chatter' amongst others who do experience this. I have come across people on the Facebook forum I use who have initially been told they have got MS only to be later diagnosed with Sjogrens. Have you read this website about these issues? hopkinssjogrens.org/disease...
Have now read the article and it does make fascinating reading! I hadn't realised how closely linked Sjogrens was with Neurological disease and the overlap with MS diagnosis.
Just as well I am being referred to Neurologist at Glasgow Southern General, have been there before and it is a superb department.
It does seem to be very important that the correct diagnosis is made, as the right treatment is so important.
I have been having these kinds of neuro symptoms since the '80s, including weird symptoms that came with overheating--for instance going blind for 10 minutes after waking up from a nap in a hot room and having a leg going completely numb in a sauna. I also have been seronegative more often than not--although I did have a positive skin test. The article about Sjogrens is interesting. I test negative for that too. I've been thinking it is seronegative APS, since both heperin and aspirin helps. Heperin more than aspirin. Of course, I'm negative for MS too. Also, they seem sun related as well.
If your docs figure out what is wrong with you, let me know, I'm going on 40 years now. At the moment my diagnosis is UCTD. One of the most distressing symptoms I have is brain fog, and I can't get treated for seronegative APS in the US, even as a trial, even though I've seen that it helps.
Since I alot of people that have APS also have Sjogrens, I wonder what is what.
I've had severe Sjogrens w/o typical markers ( enough for several punctal cauterizations to save my corneas from the dry abrasion). The thing is, though having some labs consistant with MS, I've only had "official" Lupus, Dermatomyositis, and bone disease... There are more "cross-overs" than anyone knows about! Yet...
Interesting Ann that one of your worst symptoms is brain fog. I am the same and it is totally off the wall when I get the neuro symptoms , as if it is somehow connected.
Do you have any treatment for the UCTD such as steroids or Plaquenil or do they refuse to treat evrything?
My symptoms are also much worse when sunlight is involved.
It is so difficult for folk with seronegativity, I am just grateful my Rheumy does treat me. The previous two I went to over the last fifteen years did nothing.
I'll let you know if I find out any more after I see the neurologist , mind you it will no doubt be a long wait for an appointment!
Sorry, I didn't respond. It took me 7 years to get on plaquenil originally, but helped immensely. I went into a close to remission for many years. Three years ago, I got sick again--I lost my memory altogether, was twitching, weirdly moving limbs and finally a seizure. For some reason I was written off at the hospital as "depressed," even though I had been in the best of moods before I got sick. I had to dump most of my doctors, and it took more than a year to get back on plaquenil and 5 mgs of prednisone. My brain fog did improve, but not enough, and the fatigue is just unrelenting. But my pain has improved.
My mum passed from Ms in July at 47 2months later I was diagnosed with ms to have it taken away due to brain lesions in the wrong area for ms and spinal tap was clear.
I have twitching all over limb movements
Enlarged lymph nodes buzzing in my calf’s all sorts really pins and needles swollen Tongue this even twitches .. swollen glands in my face too .
Now I’m being told all my bloods are negative and it’s all physical after watching my mum and with possible silent migraines
This is an interesting thread from long ago. Make sure you know what bloods are being taken. Sometimes a GP/PCP will take a test for ANAs and say you are fine! You have to learn what you can & be your own advocate.
There are three diseases that I have be diagnosed with that can cause these MS like symptoms: Lupus and lupus like diseases, Sjogrens and Antiphospholipid antibody syndrome. APS has a forum here called Sticky Blood and it can direct you to Dr. Hughes's website. They know the most about these MS like syndromes it seems to me. And they can also tell you about the three blood tests for APS. I was diagnosed on another just-being-researched antibody. I can't go back to the doctor who diagnosed me and I have to find a new rheumy near me, so I don't know if the diagnosis will hold.
Do you know the other symptoms needed for a firm lupus diagnosis. Do you have some of them? If you are only having symptoms for a short time, others may turn up and make the diagnosis clear. Like I said, it took me 7 years to be put on plaquinil. Until a diagnosis is made keep a record of your symptoms and take photos of rashes or swollen joints.
If anyone noticed I have posted, I am still alive. I've been working on a post but I apparently recovering from post-sepsis encephalopathy--but recovering well.
Thanks so much for taking your time to reply to me x
Yes I do get redness across my cheeks when I feel ill almost flu like but never evolves into flu.
My joints in my hips are really bad on the mri and lost of tears ect been told I need hip surgery. My bone marrow again in my hips came up on the mri as signal change and was well misty never got to the bottom of it . My legs hurt a lot but not all the time.
I have dry eyes as well as mouth. My temp seems to go up and down a lot
And obviously all the Neuro issues I mentioned before and feeling like something is stuck in my throat and my neck can me jittery and weak sore this also comes and goes .
To my understanding my consultant is a good neurologist he’s well known in London for ms and I’ve seen dr Cruze for lupus which he didn’t think I had.
He mentioned aps and recommend new blood test for lupus and for aps so I do think I have had extensive blood work done. My Nan has sticky blood and my mum had ms.
All these symptoms came few months after my mum passed and haven’t gone away since not completely anyway.
I had a pet scan done and it showed lumps near the ovaries and inflamed Esophagitis thro out.
I’m at a bit of a loose end really
My lumper punter was also negative.
I take b12 injections but that it have done for years.
I know something is wrong but what I don’t know the brain scan showed multiple gortia scar like lesions with no specific what ever that means .. neck clear. I do have pins and needles but my muscles are what concern me. I’ve gone from not needing glasses to needing prisoms for my eye muscles have deteriorated in 6 months according to my optician.. xxx
I know this is an old thread but I was wondering if anything showed up in your scans eventually? I’m in the same boat. I’m diagnosed with systemic lupus without the ds-dna antibody but I keep periodically being positive for aps and had a negative mri of the brain over a year ago. My muscle enzymes are very high and also have sjrogens dry eyes and mouth. I get neurological symptoms every now and again - the sensation of wearing a hat on my head tingling hands and feet and constant brain fog along with severe fatigue and joint pains. I take hydroxychloroquine 200mg a day and a shot of depomedrone of 120mg every four months and methotrexate once a week along with pregablin for neuropathic pain and migraines. I’m still adjusting to the methotrexate but every time I get the steroid injection the brain fog lifts and I feel clear in my head for about three weeks and then it returns again after that time causing a severe flare where I get all the neurological symptoms in succession. Can you have neurological lupus but it not be detected on the mri? Or could it be the aps lupus anticoagulant antibody that keeps appearing and disappearing in my blood. It’s driving me mad lol. Thanks for listening (sorry if I’ve rambled)
In fact I have just posted today an update on my situation re MS and strokes. It all seems to be a mine field and the “experts” we rely on actually know very little! Hope we can find out more from each other! X
It seems there are a lot of us with confusing, hard to pin down neurological symptoms! My rheumatologist did tell me after many years of saying « constitutional » symptoms that I do have « low level CNS involvement. » At that time my brain MRI was negative. Now it is abnormal. Like you, I have anti-phospholipid antibodies. What really helped me was how my neurologist explained that he can’t have a crystal ball to know why I feel a certain way at a given time. The antibodies come and go, I get dehydrated, get a virus, exposed to too much humidity. So, yes, I think your antibodies fluctuating and other things affect your neurological symptoms. They can be so strange, I know. Hope that is helpful. K
Your symptoms must be very distressing and the sensitivity to heat made me wonder if you had researched MG? I'm not sure that it could explain the flashing lights but certainly sudden weakness and blurry vision. I suspected that I had this a couple of years ago when spells of weakness and eye problems first started but tests and the passage of time appear to disprove this as a dx. I don't have Sjogrens (that I am aware of) but I do have Lupus/UCTD and generally attribute the weakness etc to this but no-one seems in a rush to either prove or disprove this possibility.
I hope the Neuro is able to shed some light on this for you. Not knowing what is causing the problem is as hard to deal with as the problem itself.
I so agree the uncertainty is at the centre of the distress of so much of what we are all going through.
About ten years ago the first Rheumatologist I saw and very respected in his field thought it could be MG as at the time I also had a slightly drooping right eyelid especially when I was tired. But as all the blood tests he took were negative after one follow up visit I was dismissed with shrugged shoulders and no further appointments!
Years later at the same hospital the next Rheumy was very thorough and even took me in as a patient for a week to do various blood tests which were all negative. He did keep seeing me every nine months or so for more blood tests as my symptoms worsened and worsened. He was determined I would not be given steroids or anything else and life became totally intolerable.
Eventually about four years ago and onto someone new I got steroids and lo and behold there was a dramatic improvement on everything including the drooping eyelid which never returned!
Sadly now the lower doses of the past are not coping with the other worsening symptoms and mycophenolate is hopefully the next step if I can tolerate it ok.
The steroids helped most of my symptoms but not the weakness in heat. It can start even with a change to slightly warmer weather . It now affects my whole body including the muscles for eating and speech which feels very odd.
Like you said, the medics are so loath to commit themselves to anything definite in case they are wrong.
One Rheumy said to me that compared to other medical fields Rheumatology is in it's infancy!! Quite scarey really!!
So sorry to read of your extra problems, as if you haven't enough to deal with!. Lupus can mimic MS / neurological symptoms which is probably why your being re- referred to neurology to check these new symptoms. You may have other tests. They have to rule out the usual and then they can treat the Lupus or Sogjren's . A few years ago I had to do this and got the all clear from the neurologist but he said that if anything else developed he would always see me. Hope I've helped?. Be better soon. X
Reassuring you also had to have neurological things checked out.It does seem to be a feature of the Lupus/ Sjogrens overlap.
My present Rheumy is very helpful but doesn't ever like to commit himself or say too much about what is causing what, I suppose it is because they actually haven't much of a clue. Not their fault just that the science hasn't got there yet!
It is only where the blood tests are positive that they feel on safe ground!
I think my guy is one of the very few in Scotland who is treating people who are seronegative but when you question him about it he is reluctant to say too much.
I personally think they are under pressure to comply with the evidence based approach or it makes life difficult in working with colleagues.
You've got the diagnoses problems spot on!. Meant to add luckily I haven't had to take the neuro up on his kind offer since!. Touch wood that continues. Look after yourself. X
am much feeling for you: we share a lot of symptoms. My version of this overheating heating may be partly down to erythromelalgia...but I think more convincing explanations will surface as my diagnostic process evolves...XO
Have followed your posts and you certainly have a really complex condition. Very, very interesting to follow, but must be extremely challenging to live with.
I am sure evryone here appreciates your input , it so helps to understand how others are struggling and coping too,
The neuro symptoms in the heat are really supposed to be symptoms of MS, but I've had two spinal taps, I have had this for a really long time, and it does seem like the sun does trigger it, so I feel quite sure it isn't MS. So it just seems to be a weird version of something lupus like or APS, since it gets better with blood thinners. Also, my old GP recently did an old antibody test on me and found I am positive for antimylen IGG antibodies. Of course, nobody knows much about these anitbodies (just to make my life more frustrating), but it does seem to be related to antiphospholipid antibodies.
At the moment I'm taking 400 mg of plaquenil, and 5 mg of prednisone, mobic, and tylenol with codeine. I'm hoping if the theory is that something is wrong with my brain other than sticky blood, perhaps there is something that will help with the brain fog and fatigue, but I don't know what that is. Years ago when I first took plaquenil, it did help clear up alot of the neuro symptoms. This time it has help some with nerve pain, but I'm still cloudy and very fatigued.
Hi Cutts ark yes you can have neuro symtoms with lupus in varied g degree's there is central nervous system lupus witch gives similar effects as ppms
I have sle also sjogrens diagnosed 2002 I also have primary progressive ms diagnosed 2013 after much testing and scanning I hope you don't have this . I thought the southern general would be one off the best on neurological issues I attend ninewells in Dundee here they do a lot off research into neuro problems with Dundee university
I was just wondering which of the various scans and investigations you had, finally diagnosed the MS ? It must be really complicated when you also have the Lupus and Sjogrens which can have those symptoms also. Your hospital did well to keep investigating as so often they just give up after they light on the first diagnosis.
There seem quite a few of us out there in this situation.
I was having a bad spell in may 2013 with headaches doctor had ordered a mi and did some other test blood etc then I started to have bad double vision walking into things tripping up etc one Monday morning things were really bad got seen by gp right away sent to hospital with suspected brain anureism where after three scan mri ct and ct with dye consultant said I had lesions on cervical spine started on anti epileptic with sorted headache refer to neurology . Where more scans lumber puncture etc led to tree day steroid infusion told I had ppms .
So hear we are told to give up work witch I did got refused esa after a year got pip reumitoligist took the huff said neuro was wrong then told me sle not been active for a while .
So hear we are about to have my medical files looked at by someone who knows what they are doing but independent if I can find some one
Otherwise trying to get the most out of life going for a few days holiday next week so not dwelling of the dark side or life g
That must have been quite a scarey time undergoing all those tests and with such alarming symptoms.
Sorry to hear about your battle with benefits.I took many years to finally get the DLA, but now more hurdles with PIP coming up soon.
Good you are managing away for a wee break soon. Hope you feel a lot better for it. I moan and moan when preparing to go away as the effort seems too much, but it always helps me feel brighter once I go and is always worth it. X
Interesting post, I have had similar symptoms to you - exacerbated by heat and bright sunshine. A neurologist last year ruled out MS (my doc was starting to think MS and I have an aunt with MS who was convinced - and still is - that it was MS - after MRIs and a spinal tap), I'm due to see a rheumatologist next. Many many years ago I had these symptoms - blurred flashing vision, crushing fatigue, aches etc and a consultant immunologist had suggested lupus, but for some reason my doc and the neurologist both immediately ruled it out due to a negative ANA test. My spinal tap produced 'borderline' results which I'm still not sure what that means and nobody seems to want to explain it - my doc brushed it off as an 'autoimmune reaction'. It's all very frustrating.
I come on here to read posts to try to get some understanding of what's going on - this has been going on now for nearly a year.
Thanks for your response. I was just saying to my husband this morning how much of a blessing this forum is to the sanity of hundreds of us out there with borderline and "mystery" autoimmune problems. My old GP who retired was so wise, for years he would say to me, the science has not got there,some day it will and we will have answers.
Meantime the suffering of the unknown can feel overwhelming at times and being able to share is such a relief !
Hope we all get to those answers we so desperately need. X
I did have suspicion of MS a few years ago but as three different MRIs were clear it was dropped. I was not really wanting at that time to have a spinal tap and they thought best to wait and see.
Since then I have been having steroid injections and the neuro symptoms virtually disappeared. Whenever the steroid injection starts wearing off those symptoms are returning and now much more severely.
My Gp is going to refer me back to Neurology but I am due another steroid injection in three weeks which I expect will resolve the worst of the symptoms. I am wondering now if I should delay my visit to the neurologist till the next injection is wearing off again, in case it masks the symptoms.
Anyway as you said Southern Gen is excellent as is Ninewells, we are lucky to have them both.
I just wanted to add my aunt who has MS had symptoms for years and several MRIs before diagnosis - it can take years before lesions show up. Another relative has lupus - she was 3 years before diagnosis after several negative tests, a cousin has RA and was suffering for over 5 years - first diagnosed with fibro and then eventually with RA. My mother has Crohns disease (as you can see autoimmune diseases run in the family) and she was struggling for well over a year before collapsing and was then diagnosed.
Very interesting to hear how much it is in your family history. Likewise my Dad had Ulcerative Colitis and ended up with a burst bowel and peritonitis before it was diagnosed. Fortunately he survived the op and was fine for years after that. Mind you that was many years ago and they have improved bowel diagnosis a good bit I think on more recent times.
I also have MS in the family on my Mums side and RA.
Like you say it will eventually come clear but it is the waiting that is hard while we all have to hang in there and be brave!!
Easier said than done! X
Just read this fascinating post Cutty - must have missed it during one of my hospital stays I think.
The Seronegative issue makes it all horribly uncertain for loads of us - we seem to float in an ever changing cloud above and around all the main autoimmune diseases such as Lupus, Vasculitis, Sceroderma, MG and MS. As you know I have a diagnosis of RA but am never sure whether this is my saving grace or my downfall since I'm too allergic to tolerate the immunosuppressants I've been tried on for it to date - and have no sign of synovial swelling in my joints or tendons these days.
My neurologist last week did mention that, as part of my extensive neuro tests he did in January to rule out MS and Lyme - that something had flagged up positive for autoimmunity/ infection. However he only mentioned this half way through the consultation (VC) and had not mentioned this in his earlier letter to my GP. So I was interested to read this; "Also, my old GP recently did an old antibody test on me and found I am positive for antimylen IGG antibodies. Of course, nobody knows much about these anitbodies (just to make my life more frustrating), but it does seem to be related to antiphospholipid antibodies."
Very cheered to read good things about the large Scottish hospitals mentioned here - especially the Ninewells. I believe the latter are the Scottish experts on Raynauds and Scleroderma and do the nail fold cappliiary tests and may look beyond negative autoantibodies too. My neurologist at ARI seems to be a very thinking man and I'm hoping that he will have a productive talk about me to my rheumatologist as he said he would. But they both seem very cautious me. And my rheumy very caught up in this idea that my equivocal antibodies and my propensity to horribly allergies means I'm best left lying in the long grass. He seems to be persuasive about this and likes to remind them all of what a pleasant woman I am and how much I seem to achieve for someone supposedly ill. That's the gist anyhow. Being told this while lying in a hospital bed makes it doubly galling!
I had hoped that their doctorly pride might be at stake when I told them we are planning to move down to Fife. But it might equally work the other way and have them shrugging and covering their backs by saying how difficult I am and let Fife have me - what with all my vague AI problems and no clear responses to tests. After all I can walk and talk and ask questions of them galore so I can't be that unwell! No joint erosions or CNS yet. And anyway there's always steroids to buy them time until they are shot of me and can roll their eyes in relief....?!
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