Can Anybody Tell Me What Is Going On???

[nananeedsthis]

June 2010 I had my first and second Grand-mal seizures, which I believe were caused by a stroke. I have been on medication for over two years for seizure-like activity, but nothing like this. I have had seizures all my life (trance-like episodes). Recently, while I was in my PCP's office, I had a series of three Petit-mals and was taken to the local hospital by ambulance for a direct admittance by the drs. request. When I was being discharged later in the week, the attending physician told me that he believed that I was having "pseudo-seizures" and that they were not equiped to handle that sort of problem. He recommended I call my neurologist to get on the cancellation list, as my next appointment isn't until Feb. 25. He also told me NOT to come back unless I am having Grand-mals. At this point in time, the neuro has not given me a complete dx. Anybody have any ideas what the heck is going on and what am I supposed to do? This is the only hospital within 40 miles of me. By the way, I'm on "Lifeline" for the seizures, because they are not under control, and I live alone with noone close by.

[nananeedsthis]

My neuro appointment has gotten pushed back until the 28th of Feb....such a disappointment, especially when you're having problems, but some things can't be helped. Also, there has been some EXTRA stress going on with me, but I won't go into details right now. At least, I haven't had a seizure in 1 1/2 weeks, which is a good thing considering they increased the medication.

I'll keep you all up-to-date as I know more,

Dawn

[faithhopegreatestlove]

Hi Nananeedsthis,

You are only too welcome. I hope you'll keep us posted.

--faithHGL

[nananeedsthis]

thank you so much for understanding...my new PCP (i just started seeing her last week) believed me about the alcohol, and is going to write a statement in my records about it. she has told me that there are a number of reasons, medical and mistakes, that could have caused this. i see the neuro soon, so hopefully this will all get straighted out.

again, thank you....

[faithhopegreatestlove]

Hello Dawn. Your story just makes my blood boil. I won't go into the details of my story, but there are similarities. (If you are interested you can read my one and only journal entry).

I'm really sorry that you were treated this way. Basically, this attending doctor has done you a great disservice. The type of seizures he refers to are called PNES, or Psychogenic nonepileptic seizures and are considered a type of conversion disorder or somatoform disorder, basically a psychological event rather than a seizure of an organic nature. You may have already researched this, so it may not be new info to you. A quick search of this forum and you'll see we've talked about this many, many times.

(Just as an aside I find it ironic that women are much more likely to be diagnosed with somatoform/conversion disorder, and about 70% of of those diagnosed with PNES are female. )

As to the blood alcohol level reading -- I don't know if any illnesses can cause you to have alcohol in your blood, but we all know that lab tests can be wrong, and some labs have a history of errors. It is possible to have a hair sample test for alcoholism -- but these are terribly expensive.

Have you talked to your neuro since all this happened? You have more than sufficient empirical evidence that what is going on with you is _not_ simply PNES.

You deserve better than this.

All the best to you,
--faithHGL

[nananeedsthis]

Thanks for the advice, and I will ask about the tests you mentioned.

My Best To You
Dawn

[thyroidian]

Hi.
Im sorry if i referred to your neuro, i didnt know it was a general PCP. Well you also state you are borderline diabetic also, and they have found a problem round the Pituarity Gland.

As you know Pituarity, and diabetes, are endocrine problems, so maybe your neuro should bring an Endocrinologist on board for further endocrine testing.

I would also ask for the bloodtests i mentioned above, just to rule this out.

Good Luck
Nicola

[nananeedsthis]

it wasn't my neuro who said don't come back, but just a general dr. who doesn't know anything. as far as testing...the CAT and PET has shown Empty Sella Syndrome, excess fluid around Pituitary gland, and evidence of muliple TIA's. The reason I believe I had strokes when I had the Grand-mals is because I could not walk properly, and my speech was slurred and difficult to understand. Even I couldn't understand it!!! After my family got me in a recliner, they couldn't get me up to take me to the hospital, so they called for the ambulance. At the hospital my left side was not responding and my left arm was curled up to my chest. Although I have never drank in my life, the blood test showed alcohol level at .17, and they put me in detox for 72 hrs, and my records now state that I am an alcoholic in denial. After, I had to use a walker for support as my legs were to weak to support me. After the second one they had to send me to a rehabilation home. That is when the seizures became a problem, and never the same type. Although lately, they seem to be settling into clonic-tonic, according to my PCP. The EEG (extremely painful this time) results have not been given to me yet, but I will get that on Feb 25. Thats about all I can tell you for now.

I appreciate the help very much, oh and my PCP has told me I am border line diabetic if that has anything to do with it???

     Thanks,
       Dawn

[thyroidian]

Hi.... Firstly may i say, how can they say dont come back unless you are having a Grand-Mal,,, how incompetant is that, they should be trying to bring this matter under control, so it doesnt cause harm to you.

I would definately be finding a good second opinion on this matter.

My second interest is you say you are having Grand-Mal seizures which were caused by a STROKE.
I hope your competant neuro, tested you for APS/Hughes syndrome.
This is a bloodclotting disorder, which can cause strokes, then the patients can often go on to have fits, and seizures, of all different types.


Have you had a Brain scan? If so what are the results of that scan?
Was the any Ischemia patterns found anywhere on it?

I have come across numerous people were by they were told they have had a stroke, followed by seizures, which they had to suffer for many years, which were all out of control putting the patient at risk off harm.
Only to find out that they had APS/Hughes Syndrome.

I really would ask your doctor to be tested for this, as it is two simple bloodtests done at the Doctors.
The two bloodtests are = ACA= Anticardiolipin Antibodies..... and LA= Lupus Anticoagulant, you only need to test positive on one off the bloodtests, twice over a period of 8 -12 weeks.

Strokes, are very debilitating, but seizures can become a pain to control, and leave you in a position where you could have an accident. I can see this is maybe affecting the way you live.
Is there any support, or help you could get from family, or an agency which supports these conditions, and maybe give you a alarm or button where you press it if you are unwell, so you can acquire the right treatment.

After hearing what your neuro said he would be fired off, he has got no dignity, and compasssion.

I would definately look into getting tested ASAP for the two bloodtests above, who knows you could find your problem here, and given the right treatment if it is, would put you at less risk.

Good Luck.
Im here if you need anymore help on this issue.
Nicola