View Full Version : confused

06-26-2011, 06:20 PM
im new to this form and my doc says my seizures are not coming from the lupus then where are they coming im confused... thanks doggy52

06-26-2011, 06:37 PM
hi doggy,
sorry i cannot help, but wanted to say hi.

there are a couple of other poeple here who regularly suffer from seizures.

they will offer more advice.

06-26-2011, 07:27 PM
Hi again doggie! Sorry I had to rush out of chat. I hate to hear your story although it could have been mine 6 months ago. I finally got them to agree that I had SLE and not SCLE but I couldn't get anyone to say that my seizures were from the Lupus. It was crazy! Seizures started after the Lupus but no one was willing to say so. Too many doctors require certain blood tests to be positive but they fail to see that there is NO test for Lupus. There are things that they look for that USUALLY happen in Lupus patients but there is nothing that happens in ALL of them that can be said to be a test or the disease. The only advice I can give is to keep pushing. If a doctor won't listen to you then find another.

I know you said that you have a neurologist appointment soon and hopefully they will give you the answers you are looking for. From our talk in chat it sounds like you have a good GP and that is a help. Keep us posted on how things go!

06-27-2011, 08:00 AM
Hi doggy52,

Welcome to our lovely family of WHL and we'll help the best we can as we're all suffering the same.

People can have seizures come on out the blue and if it happens that way they usually look at your family's history.

I had two forms of epilepsy come on me at 18yrs old and i'm now 42 and there's no family history of epilepsy and 3yrs ago i saw a Rheumo specialist who did the full works on my bloods and took details of what i'd suffered since i was 18 strokes/ DVT etc quite a list and told me i was born with Lupus inherited it from my parents and that Lupus had caused all these ailments i've had over the years and now in the past 2yrs, it's like Lupus is saying right lets attack her body now.

Seeing a Neuro which i'm under... bloods should be taken and also a full MRI scan besides and if your neuro says it's not connected through these tests you need to be sent on furthur to a Rheumo then who will do the same, as they do know that Lupus fluctuates the blood and can give off false readings and if that happens, then persist on furthur bloods to be done but Lupus can definitely cause seizures.

It will be nice gettingto know you. Terry

06-27-2011, 08:56 AM
Just stopping in to say welcome, Doggy! This is a great place to be for support and encouragement.

06-28-2011, 09:40 AM
Hello Doggy,

How you feeling today and i hope it's been a less pain free day.

Terry xxx

06-28-2011, 12:53 PM
First: "Seizures" are one of the 11 criteria used to diagnose Lupus. So, this is something that your doctors should be aware of and should NEVER dismiss! Perhaps you can show them the following articles about Lupus and Seizures in order to educate them (since they seem reluctant to educate themselves).
"Yes. Systemic Lupus Erythematosus (Lupus) can cause seizures. Researchers report that seizures occur from lupus at the onset of their disease in less than 5% of patients. Seizures occur from lupus during their lifetime in approximately 10% of patients." MedicineNet.Com

The exact frequency of stroke in SLE is not known, but the risk of recurrence may be 50% or higher, and the occurrence of stroke increases the risk of seizures.3 (http://professionals.epilepsy.com/page/inflammatory_ref.html#3) The mechanism for stroke in SLE is also not known, but it is often believed to be related to cardiac involvement (as a source of embolic phenomena) and a prothrombotic state.3 (http://professionals.epilepsy.com/page/inflammatory_ref.html#3) The presence of anticardiolipin antibody and lupus anticoagulant, both procoagulant substances in vivo, may contribute to this risk. Strokes may occur in any distribution and may be related to immune-mediated microvascular disease. Clinical features are variable and can present with focal deficits or a more global syndrome (http://professionals.epilepsy.com/page/inflammatory_sle.html) of dysfunction, such as encephalopathy.2 (http://professionals.epilepsy.com/page/inflammatory_ref.html#2)
Cognitive (http://professionals.epilepsy.com/page/inflammatory_sle.html) changes with SLE are quite variable. Presentation may be acute or subacute, with clinical manifestations of agitation, altered awareness, dementia, or overt psychosis. Although dementia is not considered one of the most common presentations, formal neuropsychological testing has suggested that 66% of SLE patients experience cognitive impairment.6 (http://professionals.epilepsy.com/page/inflammatory_ref.html#6)
The true incidence (http://professionals.epilepsy.com/page/inflammatory_sle.html) of seizures in SLE is difficult to determine, owing to the multiple potential etiologies in SLE. In one series of 91 patients, 22 (24%) had seizures. Of these patients, two probably had idiopathic (http://professionals.epilepsy.com/page/inflammatory_sle.html) epilepsy, one had probable post-traumatic seizures, nine had active systemic infections, and four had significant azotemia. All of these seizures were generalized, with focal onset in five.3 (http://professionals.epilepsy.com/page/inflammatory_ref.html#3) In another series of 161 SLE patients, 16 (10%) had seizures during the entire course of illness. Seven (4.4%) of these patients had onset of their seizures before developing the required diagnostic criteria for SLE.7 (http://professionals.epilepsy.com/page/inflammatory_ref.html#7)
Both partial and generalized seizures occur in SLE. They can occur as the only manifestation of CNS involvement or as a complication of the cerebrovascular manifestations. Seizures that occur secondary to strokes usually are focal in onset but may secondarily generalize. Seizures also may result from encephalopathy with a metabolic cause, particularly uremia from liver failure." Epilepsy.Com Professionals

"Although nervous system involvement in systemic lupus erythematosus (SLE) is unclear and controversial, people with lupus do often experience signs associated with the body's nervous system, such as:

difficulty with concentration
occasional seizures or strokes"


I hope that this has been helpful..Please let us know how you are and if your doctors are willing to accept the truth as these are well known facts!

Peace and Blessings

06-28-2011, 04:18 PM

After reading what you've said also, with what i've been told and read about...i should be suing for neglect really just because no furthur bloods was took to establish a connection.

Terry xxx