All of fighter's test came back normal, (ct, mri, and eeg). There diagnosis is that she hs pseudoseizures, which means basically that they think she can control them, and that they are not real seizures. I was very upset, for them to insinuate something like that, my mom has no need to fake her health, but if the seizures are fake, then what about her ability to walk, is she faking that. Her doctor says, she insisted that they send her copies of all the test that were taken so that she can examine them personally herself, She is a great doctor and takes a real personal interest in my mothers health.
Can anyone provide me any information on this situation?
I've just been looking up the "pseudoseizures" and by doing an EEG which your moms had they can rule them out so why say totally opposite and if she as these seizures she can't control them.
Here's a couple of good links on them to help you understand them more because your mom knows i've got 2 forms of epilepsey but there's another issue i want to check out to see if it corresponds with the seizures they've said...here those links for you.
How fighter as been unable to move like she's add a stroke and her speech affected etc...well i had a feeling that Todds-paralsis may be involved in this case...so i've just checked to see if the pseudoseizures can have todds-paralsis involved and BINGO yes it can.
With todds paralizes it affects you identical to having a stroke plus it's involved with seizures...so i'd really asked if this may also be involved to make fighter so bad as she is besides needing help.
Here's another view links for you to study but if you have a printer i'd get these to printed out and take them with you.
I am so sorry about your mom. Stay strong and we will pray she gets the right diagnosis so she can get the help she needs. This is all foreign to me but I truly care for you and her. I know your heart hurts while you wait. I cannot do much but I can sit and pray...and that I will do for her.
I've had my own dealings with unexplained seizures and tremors. I as well have had all of the tests for CNS lupus all coming back somewhat normal. They could not explain my seizure and I was told it could have been a complex migraine. After my seizure I was unable to speak for about two hours. I've never heard of a migraine that has left you unable to speak! Anyway, my primary doctor told me that to get a diagnosis of CNS lupus is very hard. It will not show on any tests until its basically too late and the damage is already done to the brain. The treatment for it is intense chemotherapy. So no doctor wants to diagnosis it without a definitive positive scan. I was told its like giving a cancer diagnosis without knowing for sure if the patient has cancer. So if they are wrong not only can the loose their license but you and your mother will have one hell of a law suit, which no physician is willing to risk. i hope things work out for your mother.
I have little experience with seizures but I do know that people with epilepsy can have normal EEG, MRI & CT results. They classify it as epilepsy of unknown origin. My daughter had a fainting spell when she was 12. According to the adult who was with her, she “jerked funny” on the way down and it looked “epileptic”. After the spell all she did was sleep (it was the middle of the day) and when I woke her up to check on her she seemed groggy. Knowing that my husband had epilepsy as a child I took her to my doctor, who sent her to a specialist. They ran a full battery of tests and all came back fine. 5 months later she had a full blown clonic-tonic (grand-mal) seizure that lasted over 5 minutes and required an ambulance. It was about 1/2 hour after before she even knew who I was. This time we had a pediatric neurologist who was new in town. Another full battery of tests all negative. The specialist diagnosed epilepsy even with the negative tests, but did not want to prescribe until she had another seizure due to the family history from her father. She felt the epilepsy was due to hormone changes (she had her first period start the night before the seizure) and lack of sleep (we also hosted her cheerleading teams sleepover the night before, but they didn’t sleep much!). She felt this created a perfect storm for someone prone to seizures. Both my daughter and my husband had the odd fainting spell followed by the seizure 5-6 months later, both at the age of 12. Neither of them ever had another seizure. The epilepsy dx was removed following 2 years of no seizures. The neurologist explained that the EEG will sometimes be negative unless a seizure is experienced during the test (only a small portion of people with epilepsy experience “light enduced” seizures).
I read through the articles provided and this one was what I think you need to focus on:
"Many people who have pseudoseizures feel confused by their diagnosis, thinking they are somehow responsible for their condition. However, psychogenic seizures are not actually under the control of the person who has them, but are a product of the subconscious. Despite the fact that they are psychological in origin, they can still be dangerous for the patient. Therefore, obtaining proper treatment to ease pseudoseizures should be a priority for patients who have them."
So even if this is what she has, she in no way can control them and is not “faking”. If she had a seizure during an EEG, they could rule out the electrical signal problem, but that doesn’t make her seizures any less real they just have a different cause. If that is the case, I would be thinking more along the lines of stress (as much as we like to think we can control stress, Lupus is very stressful all by itself and stress releases chemicals into our bodies) combined with a possible hormone or chemical imbalance (which is frequently the underlying cause of depression) creating the perfect storm. I think they need to investigate further.
Pseudo just means they have no explanation, not that she is faking. Please remember the brain can not and will not ever be fully understood. It is a complex organ that runs on chemicals and electricity and the only way to really test one is when the patient is dead, and then it isn’t fully functioning now is it. Neuropsychological and neurophysiology are the two most difficult medical subjects ever, if you have the means I would suggest a university setting. I personally have brain and spinal lesions, migraines, on seizure medications and have to have a lumber puncture within the next week to confirm or deny a 12 yr old diagnosis of MS. I have this feeling it won’t be MS but we shall see. I also take chemo daily for a blood disorder and I’m sure that masks my Ana tests. This diagnosing is hard, so much to think about, so much that can get in the way. Hang in there, Mom is not nuts, the doctors just need you to stay strong and positive for her and keep pressing for answers.
Kimberly
Tumid Lupus positive biopsy
I don't have any sort of factual information to give you and I regret that, BUT this is absolutely crazy! I cannot believe that she cannot walk, is having seizures that they can apparently SEE enough to cause these doctors to put her in the hospital, run these expensive tests and all they have to say is that she isn't having them???
WHAT?
It has been my experience during my many years with Lupus that I too have had odd symptoms (nothing quite like not being able to walk, but definitely odd) that have caused me to be hospitalized, tested to the max and then all the docs throw their hands in the air and say "We don't have a clue!". They then send me to other docs who do the same thing who continue the process until I have finally thrown MY hands up in the air and said "I'll just live with that!".
However, NOT being able to WALK is not one of these issues! Screaming in pain periodically, sure, I can do THAT - but walking is a whole other thing!
She is NOT making that up!
I am glad that her good doctor is going to look personally - perhaps that doctor can call another REAL doctor who can run the correct tests to get to the bottom of this.
I wish I were there with you, with enough energy to help you, this stinks!
I hope I didn't just make it worse. Please give your mother a hug for me!
Unfortunately, since the beginning of modern medicine, which was establilshed in 1910, doctors have been taught that if tests come back negative, blame the patient. It doesn't occur to them that there could be an issue that a test has not even been created for, or something they can't even detect with a test. SOOO very often, the person reading the EEG or other imaging tests, misses something or doesn't know as much as he should. My illness was blamed on being too hyperactive, that I just needed to relax more. Others said I was faking my hair loss and pleurisy etc. Then I went to a University hiospital, and suddenly I had a life threatening illness. So in the smaller town where they didn't test me for lupus, I was considererd a faker, and in a big hosital, I had lupus. I'm sorry you are going through the steps that most of us go through. It feels like abuse.
I have a friend whose developmentally delayed son has been diagnosed with pseudo-seizures, and they tell him and his Mom straight out that it's a behavioral problem, (that he fakes them to get attention.) So most places, pseudo seizures means what Fighter's doctor is "accusing" her of. If your Dr. uses the term to mean they do't know what's causing it, then your Dr. is a very tactful and kind hearted Dr.
Kimberly said:
Pseudo just means they have no explanation, not that she is faking.
How are you both feeling now?.... since your mom saw the specalist and we all appreciate you updating we on how your mom is Fighter, as she's one terrific lady and her name covers her well.
Hay, Hay , !!! remember tha it always takes more than one doctr to say that something is wrong ( LOL) . S don't just sick with one doctor , the Mental part of this situation is more than one , maybe even two doctors to get to the bottom . DON'T GIVE UP and let your mom know that BEVERLY L. says HELLO and to HANG IN THERE and that am praying for her .... Beverly L.
Well said mate THANK YOU and if i was Fighter & Terrie i'd go for a 2nd opinion because over the years i've been through some neuro's and you always come across a good one.
Thank you guys both from me and Fighter. She has a great doctor, and she said that she will help my mom to get through this, and she seems so genuine, the clinic even sets up a website so that you can communicate with the doctor through email, and they will post your test results on there for you as well, of course this is all confidiential, its great. Fighter sends her love to her LWL family and thanks all of you for prayer and support.