I was diagnosed with Lupus 7 years ago. Apart from a few mild flares (pains in hands) I had nothing of real significance until 3 yrs ago. I suffered from chronic dizziness, feeling like I couldn't hold a conversation, brain fog, forgetfulness, chronic tiredness.. The list goes on. I ended up in hospital on IV steroids for 3 days which did nothing to immediately alleviate my symptoms. However 2-3 wks after leaving hospital I began to improve. I haven't had anything similar until recently when I started having the above plus more symptoms which have me very depressed and anxious to the point that I can't even sleep. I attended my rheumatologist who mentioned NPSLE which has scared the life out of me.. I'm at my wits end, the past week I took a course of Deltracortil - 5mg tablets x 8 a day. I thought I was improving but have had terrible facial numbness (mainly in my chin) coming and going the past few days.. I've had visual disturbance (floaters and flashing) which is settling, had my eyes checked to be sure. I attended an ENT person last wk who feels almost certain it's not my middle ear but wants an MRI to be 100% sure. The numbness is freaking me out as I googled it and scared myself so much. I can't sleep and I'm trying to be normal for my kids day to day needs and activities. Can't stop crying and basically can't function. Has anybody else had a diagnosis/possible diagnosis of NPSLE?
Thank you.
Xx
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Aster1
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V much feeling for you aster. Where are you: UK? USA?
I ask because I've been managing a very similar complex of what we call neuro cerebral symptoms since the mid 1980 in my 30s when I had my first really long severe flare. my head numbness is on the right side of my face including my eye, but otherwise what you describe could be me. (I do have permanent numbness in hands & feet etc but this is another matter). My version of SLE wasn't diagnosed & in treatment except during emergencies at that point (I'd been diagnosed & treated as an infant & teen in the USA, but moved to the UK when I was 21 and my diagnosis was lost, so even in emergencies drs never spotted the underlying cause was lupus).
Who knows if my version of this & your version are truly similar, but we have enough in common for me to want to at least say that although I too was absolutely terrified by my version of this during that first bad flare, which began just before I went on long term duty caring for my husband whose Crohn's was flaring badly & requiring major surgery with months of recover at home etc. As the months passed, my version of these symptoms did slowly settle down enough for me to learn to manage. Meanwhile I was extensively tested by ENT, without learning much more than that my middle ear wasn't involved.
So, basically, I lifestyle managed this until 4 years ago when my lupus was recognised by rheumatology & treatment began. My consultant listed this complex of NC symptoms along with my many other lupus symptoms on her database. Last year we finally discovered that, in me, this particular complex of symptoms does respond to 4 week 10mg prednisolone tapers. So in January last I started on myco cellcept, which we found also damps down these symptoms at a therapeutic dose of 1000mg so long as I carefully pace my activities....any sustained extra exertion brings on a flare requiring another pred taper to settle
I'm avoiding asking for neurological tests, but I did test neg for MS back in the mid 1990s. Deep down I'm feeling as fearful as you describe, but I can mainly suppress this anxiety via mindfulness techniques...whatever, I've survived through sheer nerve toughing out this stuff so I could do my job over the years...I was v lucky to have an understanding boss. Now, due to these symptoms, I'm in early retirement due mainly to these symptoms, and finally at least my version of these symptoms so far responds to having finally been given pred & myco ...and I think my drs aren't currently pursuing neurological testing for this reason. but my intention is to ask at my next rheumatology clinic appt.
So, all I can think to say is: courage! It's really good your doctors are focusing on your condition. Finding the reasons for your symptoms & the best treatment may take a bit of time, but more is understood about this, and there are effective ways to manage & minimise it. Forgive me cause I don't mean to sound as if this is easy, but do all you can to practice anxiety avoidance.....rest as much as poss....maybe best not to spook yourself researching online....i too have looked into NPSLE and will avoid researching that further until my drs tell me I need to know more about it
Take care aster...hope you get some helpful replies
Thank you so much for taking the time to reply to my message on Sunday. Your consoling practical and rational approach to my illness/symptoms helped me so much, I went to bed and slept for the first time in roughly a month! This forum is a Godsend as it makes me aware of the number of people suffering just like I am. I'm definitely improving the past few days although I still have the facial numbness/funny feelings coming and going. My excessive tiredness is passing and I was able to do some housework yesterday! I'm amazed at how well informed people are about their bloods etc on this site. The only thing I know for sure is that my ANA and dsANA are positive in my bloods which pushes me up the lupus ladder. My ESR hasn't always been raised even when I've been symptomatic. I've been under chronic stress the past few months, combination of Mother very unwell, living with me, banks threatening taking our home and my husband drinking a lot as a result of these pressures. For all of these reasons, my GP is convinced that my symptoms are stress related and not strictly Cerebral Neuro Lupus.. I'm trying to deal with the stress as best I can but finding it v difficult. Anyway, I'm aware that there are a lot of people worse off than I am in terms of health so I will keep the positive thoughts strong.
You've had a very hard time in terms of slow/delayed diagnosis, I'm so sorry to hear that but you seem to be a very calm measured and wise person who has dealt with it all admirably. Do you mind me asking what supplements you take? Also, has anyone recommended a vegan diet? I've tried it but found myself quite weak and tired on it. Do you have any dietary advice?
Am so glad of your reply and this good news: being able to sleep is one of THE most important things of all time! Am giving you a virtual hug!
About the part stress & strain play re the intensity of symptoms:
Easier said than done, but Mindfulness & cognitive behavioural techniques have stood me in good stead since my youth..stress can still discombobulate me greatly, but practice over many years/ decades of ups & downs seems to mean unsettled feelings are more & more manageable. I am a depressive, as was my father (sadly he also drank too much).
After a lifetime asking myself why my NC symptoms flare, my feeling is that there are always multiple inter-playing & overlapping causes and any one who blames it all on stress or whatever is naive and simplistic. For sure, my NC symptoms have flared during especially tough stressful passages in my personal life, but these same symptoms have flared when everything has been rosy too! In time, we can gain self awareness re the effects of our emotional & psychological reactivity, just as we do re the effects of our version of auto inflammation and the effects of our meds...so gradually we gain confidence in our analysis of the multiple factors behind our flares...and this confidence enables us to engage ever more effectively with our doctors as we work together to minimise our symptoms.
Phew: that was a mouthful...sorry, can feel you do know all this already...but it's always good to repeat it, even if only for my own good!
Will PM you asap re supplements etc, but for now:
Lupus UK have a leaflet on nutrition etc which is a good starting point (I think you can download it from the Lupus UK website).
I rate The Everything Antii-Inflammation Diet Book by K Grimes (available on Amazon) which has a chapter on supplements & herbs (fresh ginger tea daily is key to my routine) and the 150 recipes are practical + good for the whole family.
I always double check all supplements before taking any with my drs & pharmacist for contraindications re my prescrip & OTC meds
Wishing you all the very best...hope you'll stay in touch
I really appreciate your interactions and discussions. Mindfulness strategies definitely help but they're not a cure-all. Finding a way to 'walk with grace' with the challenges of each day has worked for me - that as well, as finding ways to laugh and looking for beauty around me, in small places, inside and out... as well as online. I was given '6 months to live' in 1986 from CNS lupus... but changing my lifestyle completely, along with the medicines and care of some wonderful doctors has allowed me to celebrate life and live counting my blessings, in spite of daily pain and a multitude of symptoms. I have had oral lesions with the lupus, but the doctors just consider this part of my lupus pattern. I feel for anyone trying to get through the diagnosis prognosis process. I went 18 years undiagnosed. But now 30 years later, I've now lived longer than my mom or grandparents (my Dad is 93 and still positive, amazing), but now my cardiologist says that both heart valves will need to be replaced this year. My Dad had this surgery at 85 years old and I'm 65 years old. So, the lupus didn't cause the heart valve problems... it just complicated my genetic predisposition for lupus from my mom's side, heart problems from both sides and cancer from both. But here's the good news: of the 7 people in my immediate family (parents and 5 kids), I am the only one who has not had cancer. Maybe this because I did have to learn to live with limitations in my early 30's and I stayed committed to find and nurture a joy of life spirit, regardless of the challenges. I thank both my parents and my grandparents for showing me how to live with that attitude. At this point, I believe that my attitude is really the only thing I have "control" over. Blessings to all of you finding you own paths in living with lupus
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