The Diagnosis Marathon

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Endless

Endless

Even Keel
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Well, I'm beginning to feel like the road to a solid diagnosis is like a marathon. I'm exhausted.

Finally, on some paperwork my doctor put "epilepsy" as my diagnosis. (yay.) It's been a long year and a half to see that. And finally, I think the Lamictal is at the right dose (300mg), along with the gabapentin (600mg).

But at the same time he wants to have me redo the video eeg. (booo.)

Both my neurologists said it might be possible that the IIH (idiopathic Intracranial hypertension) might be causing physiological nonepileptic seizures. IIH is fluid pressure that is too high in the brain and spine. I've been charting, and there is a relationship between the seizures and headaches, but correlation doesn't mean causation. We're treating the IIH, but I'm scared drugs won't do the job.

My headache doc talked with me about head injuries, and that previous head injuries might be causing seizures. How on earth can they tell if that is the case? My MRIs are just fine - if I have damage it's at the cellular level and the only way they can see that is in an autopsy.

I'm tired. Finally a diagnosis of Epilepsy seems like just one step in the long, long, long, long process.

I mean, I'm really TIRED.

Ever felt like saying "screw it," and chucking it all? Goodbye doctors, meds, disorders. Live on some remote island in the pacific. Eat coconuts and swim in the deep blue sea.
 
Im glad that your dr finally put down Epilepsy as a diagnosis. I know that feeling too. I feel like I've been going back and fourth the past few months with this new neuro dr trying to prove to him what Im saying about my body and these new seizures. To top it off, Its been four days since Ive had my MRI and I havnt heard anything from their office. My next apt is August 25th, with the PA.... :soap: not him..... and Im not going to wait over two months to hear the results! I think its pathetic how they dont at least give you a call to let you know the outcome of the MRI. Even if things were ok!

I dream of being on a island and not having to deal with Epilepsy at all.... the past few weeks Ive had dreams of waking up and not having epilepsy no more... no more seizures, no more medications! That are some good dreams!
 
I feel the same way. I wanna just say screw it. I cant find a doc yet who thinks I need help. Its obvious that I have seizures (as TCs are kinda hard to hide) its obvious that they do me damage. (I end up temporarily paralysed, post-ictal and I have stopped breathing etc.) Its obvious I need help of some sort.

Whats also obvious is damage to my frontal lobes and right temporal lobe from the MRI I had. Its also obviously been caught on EEGs, but because whatever was caught on the Video EEG didnt show up, the neuro doesnt think I need him. The psychiatrist doesnt think I need him either and that these are not psychological seizures. That there is a medical issue causing them and I need to fix the issue or treat the sypmtoms.

Now Im literally back at square one. I keep spiking these fevers where I cant move my neck and its ticking me off. Nobody feels like doing their job here.
 
Rae,

Have you had a lumbar puncture? The fevers and stiff neck are a little suspicious. Does it reoccur, or just this once? If it was meningitis for several years I don't think you'd be sitting there typing to us. You'd be in a coma or expired. Still...... there are other things as well, that an LP would show.
 
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It comes and goes. it got really bad about a month ago. And no, I have not had a lumbar punture.
 
It seems so random and unfair -- even with good doctors and a diagnosis the disease and treatments are frustrating. And with lousy doctors and no diagnosis, the frustration just goes off the Frustration Index altogether. Rae, every time I read what you've been through and are going through, I wish I could win the lottery and whisk you to where you could get matched up with a decent neurologist. And then I'd use the leftover money to buy that island that Endless mentioned.
 
Lol aw thanks Nak. Endless is in the states too and it doesnt sound like she was matched up very well either. Or Kristen for that matter. :( Epilepsy sucks. Its totally misunderstood. and I do think that finding a cause helps with treatment. If you find the cause and treat it, you stop the seizures. Some things you cant treat so easy (like brain damage)
 
I actually have GREAT neurologists - one epi, one headache specialist. It just sooooo much testing. Soooooo much junk. Sooooo many drugs. And sometimes even the best doctors don't listen as well as they could or communicate as much as they should.

Maybe one on Nakamova's cabana boys will whisk me away.
 
My wish is that everyone here at CWE finds an oustanding neurologist that will forever take our seizures away and we can live a normal life! :)
 
Endless said:
I actually have GREAT neurologists - one epi, one headache specialist. It just sooooo much testing. Soooooo much junk. Sooooo many drugs. And sometimes even the best doctors don't listen as well as they could or communicate as much as they should.

Maybe one on Nakamova's cabana boys will whisk me away.
Click to expand...

I saw one particular bad neurologist, Dr Adam Zermanksy. I asked him could he help with my headaches. He didn't ask about them, just said, no he can't help with headaches. So imagine my surprise when I later search him online and find he is also a headache specialist!!!

Unfortunately all my neurologists have been useless so far, 13 years of uselessness.
 
davidmc said:
Unfortunately all my neurologists have been useless so far, 13 years of uselessness.
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I'm so sorry. I had a few useless ones, too. No diagnosis and treatment is much worse than a waffling/changing diagnosis (which is my situation).

Is it possible to get a new neuro? Are you in the US or UK?
 
Endless said:
I'm so sorry. I had a few useless ones, too. No diagnosis and treatment is much worse than a waffling/changing diagnosis (which is my situation).

Is it possible to get a new neuro? Are you in the US or UK?
Click to expand...

I'm in the UK.
I do currently have treatment, but that's only because I get headaches so I was allowed Topamax for the headaches as nothing else had any effect.
I did get a new neurologist in Liverpool. But the new neurologist knew people at the old hospital (typical, I go miles away and still the old neurologists are affecting things). The new neurologist diagnosed me with N.E.A.D (Non Epileptic Attack Disorder) based on the fact that I attended special school (school for people with disabilities and learning difficulties) until the age of 11. He told me to look it up online when I got home, which I did do, only to find that I do not have N.E.A.D. So I've got a diagnosis, but an incorrect one. He diagnosed this after one visit, I couldn't even tell him everything about my seizures as he didn't want to listen to much anyway (kept interupting and disagreeing with me, erm I know what happens to me, he doesn't!), so there's no way he could reach an accurate diagnosis with his attitude. I also understand that AEDs (eg Topamax which I am currently taking with success) do not work on suffers of N.E.A.D.

I was due to see yet another neurologist at my local hospital, Salford Royal (the one I've had the most problems with) next month, but had to re-arange that to August as it clashed with the genetics appointment. The new neurologist apparently knows about partial seizures, but I've been lied to before by this hospital, hence why I re-aranged that appointment, not the genetics one.

A few months ago, I met up with my girlfriend and also met a friend of hers who she doesn't see too often. I had one of the partial seizures in front of them. Well it turned out that my girllfriend's friend has the same type and has been diagnosed with epilepsy.
 
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I've had so many issues with neurologists. One that told me she was the BEST in the state and I was not epileptic...ok smarty pants then how do you explain my tonic clonic seizures?! Even with eyewitnessed accounts by my husband she still didn't believe I was epileptic bcuz I didn't have a seizure on my video EEG. Even with an abnormal EEG. I think these doctors get lazy. I've been sent back and forth to my primary, to my epileptologist, to a neuropsych who doesn't wanna treat me for anything other than depression. They don't care that I'm not being treated properly. I've had 4 head injuries due to seizures in the past two years but bcuz the MRI came back clean they say there is no damage. They can't explain the slow thought process, bad short term memory, concentration issues, migraines. They first said it was the meds but even after changing medication, several times my symptoms stay the same.
I agree with everyone...I wish I didn't have to deal with the epilepsy, the meds, the doctors who don't know anything or dismiss you when your symptoms are unusual. I think they're afraid of saying I DON'T KNOW.
 
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