Does anyone have neuro symptoms including stroke, seizures, migraines or vasculitis? I was diagnosed with Lupus cerebritis and I use steroids and vaso-dialators to treat the symptoms. I would love to talk with anyone who has experience with this, thank you.
1 - 6 of 6 Posts
Dear Susie,
I have had a major brain flare in the past. mercifully, since starting Methotrexate I have not had really bad brain symptoms. The usual poor memory and co-ordination and the odd seizure is all.
There are plenty of people here who will be along to welcome you. As you can understand we are all in different time zones so it may seem to take a while.
Welcome to you,
x Lola
I have had a major brain flare in the past. mercifully, since starting Methotrexate I have not had really bad brain symptoms. The usual poor memory and co-ordination and the odd seizure is all.
There are plenty of people here who will be along to welcome you. As you can understand we are all in different time zones so it may seem to take a while.
Welcome to you,
x Lola
Hi Susie
I don't know whether it is the same but I have lupus with CNS involvement.
My first symptoms where all neural - numbness, pins and needles, burning in skin, problems with my gait, muscle wastage of my left calf, colourful visual auras and one mild visual hallucination. After brain lesions were revealed by an MRI, I was diagnosed with MS. Six months later, this was changed to lupus on realizing that I also had raynauds.
This is an excellent forum for learning about all things lupus and provides excellent support.
Take care.
Merle
I don't know whether it is the same but I have lupus with CNS involvement.
My first symptoms where all neural - numbness, pins and needles, burning in skin, problems with my gait, muscle wastage of my left calf, colourful visual auras and one mild visual hallucination. After brain lesions were revealed by an MRI, I was diagnosed with MS. Six months later, this was changed to lupus on realizing that I also had raynauds.
This is an excellent forum for learning about all things lupus and provides excellent support.
Take care.
Merle
Joined
·
467 Posts
hi suzie :wavey:
i have lupus/cns too. mine neuro issues come and go... mainly color spots and flashes/visual disturbances. numbness and tingling in my extremities, paralysis of leg sporatically. deminsihed to non exsist reflexes. weakness and balance issues, gait problems...i seem to fail alot of the clinical neuro testings, my response time is slow. all sorts of fun things :woohoo:its just great being me :wink2:
i don't have vascular issues at least haven't had any so...as you can see everyones neuro issues are as different as lupus is.
guess that didn't help you much did it? i will say that after finally getting a good treatment plan my issues are not as pronounced as they were
feel better
hugs and kisses
i have lupus/cns too. mine neuro issues come and go... mainly color spots and flashes/visual disturbances. numbness and tingling in my extremities, paralysis of leg sporatically. deminsihed to non exsist reflexes. weakness and balance issues, gait problems...i seem to fail alot of the clinical neuro testings, my response time is slow. all sorts of fun things :woohoo:its just great being me :wink2:
i don't have vascular issues at least haven't had any so...as you can see everyones neuro issues are as different as lupus is.
guess that didn't help you much did it? i will say that after finally getting a good treatment plan my issues are not as pronounced as they were
feel better
hugs and kisses
Hi Susie and welcome,
I have a diagnosis of CNS Vasculitis and also Dystonia from the Lupus. I had many symptoms that went along with this including seizures and mini strokes, unbelievable headaches etc. It's currently controlled pretty well with Imuran - I also take other meds which help control the overall SLE diagnosis.
Nowadays they usually call Cerebritis NPSLE (Neuro-Psychiatric Systemic Lupus Erythematosis) - you can see why NPSLE has been adopted as the short form :wink2:
Most people with NPSLE will be treated with steroids in the short term and to get the initial alarming and potentially damaging symptoms under control. Their long term treatment in actually controlling the disease is picked from several Immunesuppressant medications, Imuran (Azathioprine), Cellcept (Myclophenate Mofatil), Cyclophosphamide via IV infusions for a period of time, and some have had benefit from a newer sort of treatment called Rituxan (Rituximab) also given by IV infusion.
So you see there are many treatments available and they are aimed at getting the disease process under control, rather than just treating the initial inflammation which is what steroids do. Quality of life is improved by this method and often people go into a sort of drug induced remission from the Immunosuppressants. That's where I consider my CNS problems are right now apart from if I go into a flare then it's pretty well controlled, even with a flare it's nowhere near as dangerous or damaging as it was. I still have damage on MRA scans showing but no new damage, I rarely seize these days although I do still have evidence of the dystonia but it's pretty mild as opposed to what it was.
Do you also have a diagnosis of APS (antiphosholipid syndrome - aka sticky blood)? Just asking because of the migraines and some of the symptoms and problems are similar to NPSLE but it's much more easily treated in the vast majority of cases.
Hope you gain much from the site and anything else we can help you with we will try.
love
Lily
I have a diagnosis of CNS Vasculitis and also Dystonia from the Lupus. I had many symptoms that went along with this including seizures and mini strokes, unbelievable headaches etc. It's currently controlled pretty well with Imuran - I also take other meds which help control the overall SLE diagnosis.
Nowadays they usually call Cerebritis NPSLE (Neuro-Psychiatric Systemic Lupus Erythematosis) - you can see why NPSLE has been adopted as the short form :wink2:
Most people with NPSLE will be treated with steroids in the short term and to get the initial alarming and potentially damaging symptoms under control. Their long term treatment in actually controlling the disease is picked from several Immunesuppressant medications, Imuran (Azathioprine), Cellcept (Myclophenate Mofatil), Cyclophosphamide via IV infusions for a period of time, and some have had benefit from a newer sort of treatment called Rituxan (Rituximab) also given by IV infusion.
So you see there are many treatments available and they are aimed at getting the disease process under control, rather than just treating the initial inflammation which is what steroids do. Quality of life is improved by this method and often people go into a sort of drug induced remission from the Immunosuppressants. That's where I consider my CNS problems are right now apart from if I go into a flare then it's pretty well controlled, even with a flare it's nowhere near as dangerous or damaging as it was. I still have damage on MRA scans showing but no new damage, I rarely seize these days although I do still have evidence of the dystonia but it's pretty mild as opposed to what it was.
Do you also have a diagnosis of APS (antiphosholipid syndrome - aka sticky blood)? Just asking because of the migraines and some of the symptoms and problems are similar to NPSLE but it's much more easily treated in the vast majority of cases.
Hope you gain much from the site and anything else we can help you with we will try.
love
Lily
1 - 6 of 6 Posts
Join the discussion
The Lupus Forum
A forum community dedicated to people living with Lupus. Come join the discussion about treatment, nutrition, news, reviews, accessories, classifieds, and more!
Full Forum Listing
Explore Our Forums
Recommended Communities
Join now to ask and comment!