My symptoms lately are all the classic MS ones , never experienced before , especially the muscles weakness, burning feeling , spasms , I had a lumbar puncture about 3 years ago and was negative but I didn’t have this symptoms then . Should I mention the rheumatologist my concerns?
Thank you 😊
Yes I would mention your symptoms to your GP or rheumatologist and ask for a neurologist referral. Lupus can cause spinal inflamation as well. Also entrapped nerves are common in the healthy aging population so it could have non disease causes as well that still merit diagnosis and treatment. Good luck.
Hi, I would too. we all have so many varying pains etc how do we know what each one is. symptoms could easily get lost because we assume it's lupus.
Hi -definitely mention this to your rheumatologist. I have the symptoms you describe as part of Sjögren’s. My lumbar puncture of 4 years ago showed a systemic process occurring by matched oligloclonal bands - but nerve conduction tests have been normal. The neurologist and rheumatologist tell me that this is typical of small fibre neuropathy (SFN) often associated with rheumatic diseases. healthline.com/health/small...
This is totally me 😔
It’s only the skin rashes that sway me away from MS.
I get a lot of pins and needles, tremors in hands, painful feet , shooting freezing cold feelings through my body, some days my hands don’t work normal and episodes of lack of bladder control.
I mentioned all of this at my last appointment and I had a mri of spine and brain. I’m due to see a neurologist in September. It would seem appropriate to mention all symptoms to rheumatologist xx
I agree with the rest. Call the rheumatology nurse in case the doctor needs to see you sooner. It isn’t just an issue of lupus vs MS. All autoimmune diseases can have neurological issues.
K
You have had some super answers already but I wanted to add that it’s really worthwhile making a list of all your symptoms before your appointment. That way you have it all written down and don’t forget to mention something important during the consultation. All the best with your appointment x
Melaxx,
Don’t forget, it’s very often the case with autoimmune disease connective tissue diseases that there are more than one that come along. Some may more fully developed than others. For example, I have a very severe case of APS ( Anti Phospholipid Syndrome, sometimes also known as Hughes
Syndrome) and a very mild case of lupus, and Although I meet the diagnostic criteria for Sjögren’s syndrome and it’s in my chart, I feel it’s quite mild.
So, what I’d like to ask you, is it possible you might have Anti Phospholipid Syndrome? ( APS?) Do you know if your Rheumatoligist is keeping an eye on this for you?
APS is what I call the ,” clotting / hyper coagulable component “ of the Lupus spectrum - for ease and expedience sake of explanation.
I had a look at your posts ( through my “APS lense” ) and I note that you also have tummy troubles. Obviously, many things can cause this. One is dysautonomia.
One is abdominal angina. Especially after a meal. Both can result from hyper coagulable blood.
You mention a question of MS. Many APS patients are initially sent to MS clinics by their GP’s . What happens with APS is sludgy blood to the tiny capillaries that supply the fine nerves of the spine become impaired.
“The end organs are particularly vulnerable.”
This is what Professor Gram Hughes explained to me when we were discussing my balance issues in his clinic.
My San Antonio APS Neurologist told me the same thing. She has a jr neurologist working under her that my local neurologist calls the “MS Goddess”. These two women work with both patient populations. I do not have MS, but I do have Chronic Inflammatory Demyelinating Neuropathy. My Local neurologist is a seizure expert, and he trained in London at Queens college. I have a stellar Neurology team.
My neurologist identified my seizures in 2012, and I was diagnosed with APS in November of 2016. He worked with my visual and verbal aphasia. Queens college has a very famous neurology department for the language center of the brain.
Professor Paul Homes is a London based Neurologist that has extensive knowledge of both APS / Lupus and MS. If you have any concerns, this would be a specialist to see that could help you discern between the two, or perhaps suggest a completely different scenario altogether.
This is just a thought- see what you think. See if you think any of your symptoms might fit. The good news is , if it does happen to be APS, the vast majority of patients begin some kind of anti platelet, or blood thinner, depending on their particular history or situation, and feel much better as the blood moves more freely through the body.
APS is the context of lupus tends to work slightly differently, I think. The antibodies have been known to be a part of lupus since their recognition. It is standard practice for rheumatologists to test for these antibodies in patients with lupus and UCTD so that they know their status. In any lupus patient with neurological signs would these antibodies would be tested or re-tested. Although there may not be enough true APS specialists, any rheumatologist who is not aware of the anti-phospholipid status of his/her patients would be rare and remiss.
I only mention this because those with primary APS may have a different diagnostic dilemma. In lupus the doctors are watching for associations and complications of these antibodies all the time. It is no different from watching closely for kidney disease in patients with a certain profile.
Interesting comment. How do doctors define “mild” lupus? Is it by your bloodwork? I have, I guess, mild APS in that I’ve had miscarriages years ago but haven’t clotted and have the APS antibodies. Also joint pain and fatigue. Dr tested me for lupus but the lupus antibodies came back negative other than ANA. In last three months I’ve developed a Malar rash, which is getting worse everyday, So was wondering what mild lupus is.
If you can pin a doctor on a definite definition, I’d love to know!
I do not have the classic lab indicators- such double stranded DNA. I do have one positive ANA which is associated with lupus, but not exclusive to lupus.
I do not have the classic lupus nephritis. ( therefore I don’t know very much about the kidneys or the tests- or the correct language around this so forgive me here.) Occasionally I will spill a tiny amount of protein. My Rheumatoligist says that’s inflammation.
My Clearance tests are starting to be on low to mid 80’s - maybe high 70’s - so if you have three in a row come back like this is can indicate mild kidney involvement. But this is so minor it’s not even an issue.
I do not have the classic ,”aches and pains” of lupus.
To say I have lupus is absolutely not accurate in my opinion.
Some of my doctors say, yes. I have lupus because APS is on the Lupus spectrum, and I do have features of full lupus with my hands and nails. ( my skin is fine- no malar rash.)
My Rheumatoligist says it’s a low, or mild lupus that’s sliding very slowly more to lupus over time. ( this is why plaquinil is so important. It halts it’s progression.) We just treat what needs treating as it comes along.
Thanks for your reply. I do have positive ANA and antiphospholipid antibodies as I mentioned. I am also on Plaquenil and it seems to help quite a bit. I’m just wondering about this Malar rash. I do have appointment with rheumatologist on the 15th, so I’ll see what she says. I also have stage 3b kidney disease but my nephrologist doesn’t think it’s caused by any autoimmune issues. Guess I’m just weird.
Plaquenil was the wonder drug for me all those years ago when finally I was diagnosed with Lupus , at one point I was in remission. It’s the only drug I would recommend to a person with classic SLE symptoms. Unfortunately now some of my symptoms are different that’s why the old Plaquenil alone seems not to work . x
There are definite parameters regarding all aspects of severity for lupus. There is a lupus damage scale that I believe is used in both the UK and the US. The degree of organ involvement and damage to vital organs are all considerations.
It is a great question. When we feel sick, it does not always feel « mild, » right? But know rheumatologists access your illness at every visit and try to adjust medications accordingly.
One tool that is used is called the lupus severity index. You might want to look at that for comparison.
Hope that helps.
K
Sounds like you will be watched closely. You started out with APS but your symptoms have evolved. Did the doctor tell you to avoid the sun?
Best of luck with this. Hoping you stay mild.
K
Why would you not mention it?
Absolutely. I was investigated for MS too. The symptoms are similar but bloods indicated lupus x
I’m very , very scared atm, this new symptoms are strange , different from the usual Lupus flares up , first I had it since Easter now , the more stressed I get the more weaker I become , the medications haven’t worked , the Specialist said maybe we need to do intravenous steroids treatments . I’m going to see him the 11 July . Lupus for me has been always pain in my joints , raynauds, occasional hair loss etc but now it’s all a new game , I’d rather feel the pain at least I know there’s life there but the weakness, numbness , weird headaches the worries that maybe one morning I wake up and won’t feel my legs is terrifying. I haven’t be able to go to visit my mother (81) bc I can’t travel , I’m totally on my own , one son with his own problems he’s convinced he has lupus or something similar and he blames me but he doesn’t want to go to the dr he said he rather don’t know it , I feel guilty for it bc if he has lupus obviously it got it from me .😢
It is very scary but please remember there are a lot of treatments available for both lupus or ms or any other serious cause of such issues. The important thing is to let your doctor know what you are experiencing.
You are not to blame for your son's condition. Lupus is more than just one cause it takes DNA and environmental stimulants. Many with the genetic DNA never acquire lupus and many without genic histories of lupus go on to acquire it. It is luck vs bad luck not blame. Forgive yourself, even if your son is not wise enough to do so. Blame, Guilt and stress are part of of a host of possible environmental stimulants believed to possibly lead to flares.
I hope you have a lovely day today and I am sorry for your pain.
Thank you everyone so helpful as always , so many things to ask to the rheumatologist, I’ll write everything down so I won’t forget anything. Thank you 😊 xx
Hi Melaxx I had a development of very similar symptoms to the ones you describe (burning pains down my arms and legs with feeling of weakness) and I was diagnosed with Fibromyalgia. I was worried it was Lupus affecting my nervous system or MS but it didn’t turn out to be that. Do tell your Rheumatologist.
those symptoms could be many different diseases, I wouldn't jump to conclusion that it is MS. It most probably isn't. It could be a simple Magnesium deficiency or something like that...
Oh hi me and you are the same 😂
I was actually diagnosed with ms at the start my mum had ms and I have lesions on my brain multiple scarring but it is in the wrong area of the brain my neurologist (ms specialist dr malik was certain it was lupus but all my bloods including ana were negative aps strongly suggested by dr kaul still no further forward apart from uctd and that is not certain I have to have more brain scans pet scans muscle biopsy muscle tests and blood work under doctor de Cruz .
Although I lost my mum to ms I do know that there is so much that can be done now and couldn’t be done when she was first diagnosed so please don’t worry.
I have a lot of weird symptoms neurological and rheumatological muscular weakness in neck shoulders and hips. Muscle twitching jolting dry mouth eyes pain burning ect ect.
The best thing for you to do now is keep looking after yourself build yourself up and eat right exercise and let the doctors do the rest. Xx
Hi Melaxx, I would definitely mention these symptoms to your doctor but just so you know, people with lupus also experience muscle weakness and paresthesia. Before my lupus diagnosis and before my treatment began, I had these symptoms. They have both gotten profoundly better with hydroxychloroquine. I hope you get answers soon. Take care, Nan
Lots of things can have overlapping symptoms.
For example, I got really bad muscle burning, spasms, weakness, and it turned out to be dehydration and not drinking enough. Low magnesium and Vitamin D can cause symptoms too.
So don't assume it is MS because you can get those symptoms from lupus and a lot of other causes. Just tell the doctor what your symptoms are, and they will do the appropriate screening.
Meanwhle, try staying fully hydrated (at least 8 glasses of water a day) and see if that helps. And a good multi-vitamin.
The consultant is going to send me to check muscles resistance ( I think he said that my memory’s so bad) lungs function, he sent for more specific blood tests to checks for any infection who maybe caused the ck muscles inflammation to go so high . He told me he will check with professor Bruce in Manchester ( I go there once a year) to see what to do if the cortisone drugs who I’ve been taken since May hasn’t worked on lower the inflammation, maybe he thinks I need cortisone direct into the veins via infusions .
Lupus or not lupus?... That is the question...
lupus?
Is this lupus?
Lupus?
