Conflicting DX's - CC says seizures only - Neuro says TIA's - Help?

[GalaxyGirl]

Hi there,
I've never posted before, though I registered a year ago. I'm not sure how to start but i'll try to condense as much as I can.

I have been having focal/petit mal seizures daily for over seven years now but had a history of sporadic seizures since childhood.

In 2000 I was rear ended and got a bruised brain, whiplash and who knows what else (little medical care then). After that, I started having TIA like episodes. My family doctor DX'ed me with same but whenever I went to ER I got the "your having a headache/panic attack/bells palsy/who knows" routine every time. I also started having severe head pains and headaches and neck aches.

Anyway, fastforward past ALLOT of medical crud and time to more recently - My "TIA's" stopped in 2005 (I had had more than I could count) and aside from the ever increasing seizures, I was getting better. Now, about 18 months ago, they started up again (shortly after having a baby and then getting partially strangled).

They were much worse this round and my neuro told me yes, they were TIA's and some were even small strokes due to the lasting damage. Now, keep in mind that for a few years now I have been getting MRI's on an almost yearly basis (more often this year) and ALL come back normal (aside from hemangioma and mild cervical lordosis). With each normal MRI my GP dismissed me more and more. My neuro explained that I might be having the type of stroke that only shows up on MRI within a short time frame of happening and that's why nothing is showing. He gave me an official DX of vertebral-basilar transient ischemic attacks (plus my seizures of course). This has helped my GP back off and treat me like a human not some hypochondriac, etc.

Problem is, I got a referral to the Cleveland Clinic last Spring and they ordered a bunch of tests which took for heck and ever for me to get done (mainly because of my horrid memory issues) and I was SUPPOSED to have my follow up appt. there yesterday. The day before, the doctor I saw there calls me up and asks why I am coming to see her. She proceeds to tell me my MRI was normal, doesn't mention the other tests aside from the labs (which I had to tell HER were normal as she didn't have the info) and then proceeds to tell me I am not having strokes - THEY ARE SEIZURES. I tried to ask how seizures could cause such symptoms as numbness, thunderclap headaches with bloody eyes, muscle paralysis, severe head pain, etc and she just said some seizures can do that and blew me off.

What in the heck do I do now? There isn't anywhere to go beyond the Cleveland frikkin' Clinic. My MRI's are clearly not going to show anything obvious (though when I look at the films I see stuff but im not a radiologist) so I am SOL there.

I am SO SICK of getting the diagnostic blow off run around BS while I slowly deteriorate. And now I am worried that my GP will get this report and use it as an excuse to treat me like crud again and never try to help me with this again.

I don't know how my neuro will react though I am hopeful he'll still be of the same opinion about the MRI's as before.

I certainly don't want to be having strokes but I find it very hard to believe that seizures could cause horrific pain, half my body to numb(temporiaily), for me to PERMANENTLY lose function and feeling in my lower legs (requiring PT), to cause swallowing problems/aspiration, for me to get a bloody eye with a nasty headache TWICE, for blood vessels to pop for no darn reason in my extremeties, for the constant stabbing hellish pain in my head, for me to temorarily (about a month) lose my ability to write more than two sentences, for my signature to permanently change (it's finally nice looking again at least ), for my memory to go perma swiss cheesed (ican't even remember how much my latest two children weighed at birth), for me to lose my ability to work this summer (I had a highly technical job), for me to black out whenever the weather gets above 70 (OK, that MIGHT be seizures), to lose bladder function (thank God that came back in time), and so on and so forth ad nauseum.....

I feel like I got majorly blown off again and I just don't know what to do. BTW, my father is currently suffering from primary progressive aphasia and dementia and is in hospice care at the age of 62 and he's had normal MRI's throughout too. Oh, and my mother died of a massive stroke at 42 (I am 36 now). WTF? Do I just give up? I never went to the ER for attacks/strokes in the past 18 months due to all the times I got blown off years ago. SHould I start? Or would that be another pointless waste of time? BTW, epilepsy runs in the family too, just FYI.

So, any suggestions? I am really at the point of giving up on trying to find out what's wrong but I know that would be selfish as I have children I need to be here for. Heck I am pregnant right now! Ugghhh.....

Anyway, i''ll shut up now

If anyone has any suggestions or ideas, I would love to hear it.

Thanks for reading this,
GalaxyGirl

 

[Endless]

Galaxygirl,

I'm so sorry you are going through this. The diagnosis stage can be like running a marathon, but having to dodge a bunch of obsticles while you are running. It's exhausting and frustrating.

In my opinion, some of the symptoms you mentioned are very serious and you need to get them addressed ASAP. I know you are trying, but you need better doctors.

You have so much going on that I think it takes a really GOOD neurologist to figure it out. And it may take more than one neurologist or specialty to get a good handle on it. It sounds like you may have more than one thing going on - maybe hereditary epilepsy, plus TIA's, plus something else???? You need a superstar neuro to sort through all this. A good place to find one is a regional epilepsy center. Here's a site where you can search for the one nearest to you:
http://www.naec-epilepsy.org/find.htm

Are you on an AED? If so... For more info on pregnancy and seizure meds go here:
http://www.epilepsyfoundation.org/living/women/pregnancy/weipregnancy.cfm
http://www.epilepsyfoundation.org/answerplace/Life/adults/women/Professional/pregnancy.cfm
http://www.epilepsyfoundation.org/e...ptic-Drugs-in-Pregnancy-Not-as-Serious-as.cfm

You and I have a lot in common. I've suspected something like head injuries from multiple auto accidents and sports injuries, or TIA's as a root cause for my seizures. My mom has vascular dimensia from TIAs. Hers don't show up in MRI's, just like yours don't. I wonder if I'm in the early stages of what mom's going through. I have periods where I'm an utter idiot and can't remember much of anything, can't converse well, am a total klutz, and have a flurry of seizures. Then I have periods where I'm perfectly fine.

I'm finally seeing a headache doctor in addition to my epi, and that headache neurologist is working hard to see if there is a root cause for all of it. He is located at my regional epilepsy center, too, so it's easy for him and my epi to communicate and work as a team to figure things out.

Will you let us know what you decide, and whether you switch doctors?

Good luck on your pregnancy. I'm so happy for you. How far along are you?

 

[Nakamova]

Hey Galaxygirl,
I second Endless' advice. If your GP is dismissive of what sound like serious symptoms, then you need to find a different one who will listen and work with the specialists to treat you properly. Neurological symptoms can be very tough to diagnose, especially if there are co-occurring conditions. The fact that your "TIAs" re-started after having a baby could point to seizures having a hormonal trigger. Though Lord knows, there are other trigger-like stresses associated with being a new parent, and being strangled(!?!) could also cause a variety of reactions.

Best,
Nakamova

 

[DayDreamer]

Has todd's paralysis ever been discussed?

 

[GalaxyGirl]

Hi Endless,
Thank you for responding to my long post . I apologize for taking a bit to write back but, writing back in under 24 hours is actually a recent record for me . Also, thank you for the link to the Epilepsy centers. It's funny because the neuro from CC told me I should go to their epilepsy center as part of her blow off and it turns out it's one of the closest Epilepsy centers from the site you linked to. Maybe I should set up an appointment there after all. I am kind of worried about that though as I had a 20 minute eeg a few years ago which showed nothing and I worry that I will go, get some long eeg and it will show nothing too, leaving me with another negative test. But, I need to get over that fear I guess. Anyway, i'll call my GP after the holidays and ask for a referral there and make sure I don't get an intern this time .

Luckily, I HAD been on a rotating cocktail of crud before I became pregnant but had stopped all but the pain meds before hand out of being sick of them making me sick . I swear, the Baclofen was the worst! That stuff is evil . I had been on Zonegran for about a year and it was working very well. Anyway, the baby hasn't been exposed to anything too nasty and I am doing all the fun high risk pregnancy stuff again, so they'll be fine. Oh, and I am three months along.

It really does sound as if you and I have many things in common. We both have a family history of neurological frailty (that's how I have come to think of my fam's lineage). I always speculated we traded big brains for working ones as there is a long line of genius in my family as well. Heck, once upon a time I qualified as such (but not anymore). I worry the same thing about ending up like my Dad. It's scary when we see our parents go downhill then start exhibiting similiar type symptoms that scare the bejeesus out of us, isn't it?

BTW, I didn't even know there was such a thing as a headache neurologist. I really hope they can help you. I suffer from excruciating headaches as well so maybe I ought to look into that too some day.

Well, I better move on to the next replies. Thank you so much for your kind and helpful post. I appreciate it. Best wishes, GG



Nakamova,
Thank you for your reply. You could have a point about the hormonal influences. I have always said )well, for the past few yhears anyway) that my seizures were definitely aggravated/altered by my hormonal state. So, that might account for a percentage of activity and unexplained attacks, but not all.

I failed to mention that I also had a decently bad case of pre-eclampsia last pregnancy which lasted for about six weeks after the baby was born. I had a severe upswing in seizures then along with my first one that just wouldn't go away (it lasted about 2 hours I think). It wasn't more than 6 weeks later or so that I started having my TIA's again so there may be a connection there as well. As for stress, oh yes, that was definitely a factor. But, I proactively combatted it, received help when needed, worked on stress reducing techniques, etc, until things got quite good this summer. I actually think lifting the burden of trying to do a job that had become impossible helped enormously as well. Yet still, I have the occasional attack. Luckily they have gone way down in frequency since last fall but they do still occur around once every six weeks or so.

Thanks again for your reply and best wishes, GG



DayDreamer,
Thanks for suggesting that. It actually hasn't been mentioned to me. For some attacks, where the effects only last a day or two (which I normally attribute to TIA's) it could be applicable but for the other, longer lasting attacks (which my neuro says are small strokes) the effects can last weeks and sometimes months. For instance, I had an attack last March and I noticed the next day I couldn't put my foot in my shoes. I then noticed my whole left leg was not working right especially the calf and foot. I had instantly lost much of the function in the leg (which had happened beofre a long time ago with the other leg but not as bad). It tooks months of physical therapy and time to get things working "right" again. I still can't feel some of the muscles in legs and I have more pronounced limp now, but I have retrained the muscles to work whether I can feel them or not. But even the loss of sensation is SLOWLY getting better so I am hopeful I could be back to normal within a nother year. There are some thing that just don't seem to ever come back though. Like my left eye. I cannot for the life of me move the muscles in my eyebrow or forehead independently on that side, and trying to exercise it or anything like that just gives me a headache . It's been a couple years now with no progress. Now that I know about PT, I probably should have attacked the problem when it was new and lost my window to fix it.

Anyway, thank you for your helpful suggestion. I appreciate it.

Best wishes, GG

 

[Endless]

Hi, Galaxygirl,

It's my father that we think actually had seizures - simple and complex partials. We figured that out by memory, some of the kooky stuff he said and did, as well as telling my mom about episodes of Jaimas Vu (he didn't call it that, just described it) He's gone now, so there's no way to tell for sure.

Then you add in my mom's stuff.

All this is so complicated. No easy answers. Tangles of symptoms and family history. Too many variables!

 

[RobinN]

http://emedicine.medscape.com/article/1184384-overview

* Somatosensory-primary sensory cortex seizures usually elicit positive or negative sensations contralateral to the discharge.
* Symptoms associated with seizures from the postcentral gyrus include tingling, numbness, pain, heat, cold, agnosia, phantom sensations, or sensations of movement.
* Abdominal pain usually originates from the temporal lobe, and genital pain from the mesial parietal sensory cortex.
* The posterior parietal cortex is the likely origin of limb agnosia.
* Supplemental sensory-secondary sensory cortex seizures may have ipsilateral or bilateral positive or negative sensations or vague axial or diffuse sensations.
* Visual-calcarine cortex discharges produce elemental hallucinations including scintillations, scotomata, colored lights, visual field deficits, or field inversion.
* The visual association cortex is the probable location of origin of complex visual hallucinations and photopsias.
* Auditory SPS from the auditory cortex typically are perceived as simple sounds, rather than words or music.
* Olfactory-uncinate seizures originate from the orbitofrontal cortex and the mesial temporal area. Perceived odors are usually unpleasant, often with a burning quality.
* Gustatory seizures usually are associated with temporal lobe origin, although the insula and parietal operculum also have been implicated. Perceived tastes are typically unpleasant, often with a metallic component.
* Vestibular seizures originate from various areas, including frontal and temporal-parietal-occipital junction. Symptoms include vertigo, a tilting sensation, and vague dizziness.
* Psychic SPS arise predominantly from the temporal and limbic region, including the amygdala, hippocampus, and parahippocampal gyrus. Perceptual hallucinations or illusions are usually complex, visual or auditory, and are rarely bimodal.
o Includes the déjà vu and jamais vu phenomena
o Emotional: Fear is usual, but SPS can elicit happiness, sexual arousal, anger, and similar responses.
o Cognitive: These responses include feelings of depersonalization, unreality, forced thinking, or feelings that may defy description.