Apparently Back to the Seizure Diagnosis

[spastic]

Hello Everyone!  I had my EMG this morning with neuro #2, he is in agreement with neuro #1, that I am having seizures.  He witnessed several of them in my hip, they just go over and over.  He is going to consult with my pcp and find a treatment plan for the hip.  Do I just accept that I am having seizures?  I just can't believe they can be this painful.  

Spazie Ada

[Freespirit24]

I know nothing about seizures but I would suggest stepping back and bit and taking time to breathe and listen to your body and not your mind for a little while. Take time to be still. Afterwards you may well find that you have a better clarity of mind on the situation.

Sometimes when we have no other answers and we have ruled out most other possible causes,we make a choice to perhaps trust the Neuro and see if the treatment he suggests helps or to go to another Neurologist. Somethings are not always as straight forward as we would like them and diseases do not follow the normal pattern.

It is important to stay as calm as you can and document your symptoms which I think you are doing. Also ask questions of your Neuro, I bet you walked away and later wishing  you had asked "such and such', write them down and phone back and ask them. Did you put this in the Neurology section as well for the Doctor to give a reply?

I wish I knew more to say to help.

Sending lots of positive healing energy to you and praying.

Hugs

Sarah

[spastic]

Ok, I need to clarify and add somethings here.  The seizure (spasm) in my hip constantly goes over and over, I have them so much it has increased my muscle mass.  Why it is affecting my hip and not other areas?  I don't know.  I do have periods where my whole body locks up and I drop to the floor right after its over.  The tremor and bobbing head comes and goes with the waves of the spasms.  However it is not constant like my hip.  I was told it is very rare and unusual to have them like I do.  I have lesions although I do not know where there are exactly.  Neuro #2 and my pcp are going to figure out the treatment plan for me, I more than likely will be put on more anti-seizure meds, and more pt for the hip.  This doesn't make any more sense to me than it does everyone else, I'm sorry if I'm confusing people, I am at a loss here and in denial, again!

[Deb61]

I've learned something new about seizures.  I thought this didn't sound right at all to have a seizure and not even lose partial consiousness, so I googled it and ran across this page:

http://www.lissencephaly.org.uk/aboutliss/seizures.htm

What does your neuro say that source of your head-bobbles and tremors are?  I have those, which my neuro says is due to a lesion in my cerebellum.  

Deb

[Momzilla]

Hmmmmmm.  Weird.

One of the first 'signs' I presented with neurologically was 'myoclonic jerking.'  And I have had some partial seizures.  I know seizures are strange, but this Dx doesn't sound right.  But, I am not a doctor.  People  confuse me for a dcotr ALL the time, though due to my very scholarly and academic bookish look.  It is hard to reign in.

What have they talked about with regard to treatment?

Zilla*

[SOONERMOM]

So are you in a constant hip seizure??? How is that possible.  So did he have some treatment plan that is going to take care of this for you?  VERY ODD!!  Aren't you already on neurontin or something?  I hope you can get some relief from this and soon!

Stacey

[Nerve_Wrecked]

I agree, it seems like such an odd diagnoses considering the problem.

I'm not at all a medical professional, so that's pretty much all I can say "seems odd to me".

I hope someone gets things straightened out for you, and SOON!!! What a terrible mess!

Hugs
Christine
(un-dx)

[Rena705]

This all seems very strange to me too honey...it seems that you are in the throes of something more constant than a seizure to me...this is definitely more serious than a simple jerk waking you up in the middle of the night (other than the hubby that is tee hee, couldn't resist that one honey!)

I guess you will just have to wait and see what the gp thinks and maybe you can get more eye opening information from him?  Just grasping at straws as you are Spaz...wish I could be more help for you!

Lots of Hugs,

Rena

[spastic]

I just don't get it though, if they are calling it myoclonic-tonic seizures, wouldn't that mean I was having grand mal seizures?  I just don't think they have it right yet.  According to the Epilepsy Foundation Generalized tonic clonic seizures (grand mal seizures) are the most common and best known type of generalized seizure. They begin with stiffening of the limbs (the tonic phase), followed by jerking of the limbs and face (the clonic phase).

Myoclonic seizures are rapid, brief contractions of bodily muscles, which usually occur at the same time on both sides of the body. Occasionally, they involve one arm or a foot. People usually think of them as sudden jerks or clumsiness. A variant of the experience, common to many people who do not have epilepsy, is the sudden jerk of a foot during sleep. First aid is usually not needed, however, a person having a myoclonic seizure for the first time should receive a thorough medical evaluation.

I don't jerk around with them, I tremble from the pain of them, sometimes I feel like I have a bobble head, a tremor but I don't lose consciousness with these.  I dont understand where they come up with these at all!  Why would they center around my hip, why not someplace else different?  The more I try to find out the more confused I am!  UGH!!!!

Sorry for venting,

Ada

[Rena705]

Hi honey...I have had Grand Mal Seizures and I know the after effects are excrutiating!  It is as though someone has reached in and torn almost every muscle in my body when I come out of it and it take a long time to get over.  

I haven't heard of these sort of seizures in single body parts but I would imagine they would be VERY painful honey!  Hopefully they can get this under control soon though!  You wouldn't be able to tolerate that pain for very long that is for sure...leg me know what they decide for you for treatment ok?

Loves ya,

Rena

[spastic]

  He seen my hip have myoclonic-tonic seizures.  I tried to explain it is just the muscle spasms but he was not amused or convinced by it.  Although he said it is unusual to see them go over and over like that, he says it can happen.  I guess I am unlucky. BTW, I love the name Curiouzilla....:)

[Momzilla]

What do you mean he witnessed seizures over and over in your hip?  Did he say what type?

Curiouzilla*