SO we went for a 2nd opinion and after several MRI's and other specialists and going to the wills eye insitute for bilatteral optic neuritis and being deemed legally blind they said I had MS. that 2nd opinion was a neurologist who then had me looked at by the head of the neurology dept at that same hospital who agreed that it was indeed MS. Then they closed down that hospital as I was about to start treatment so I had to get a new neurologist and another opinion. That is now my 4th and current opion/neurologist and he agrees that I have MS with mild seizures and fibromyalgia.
I have had optic neuritis several times, extreme weakness and fatigue, numbness in my hands and feet. Usually my entire left side is numb and my face droops on the left side looking like I had a stroke. This all comes and goes however. I was diagnosed in 1998 and put on injections called avonex. I went into remission about 4 years ago and took myself off of all meds. I was doing really well and opened my own store. Moved my business from my home to a brick and mortar building 2 1/2 blocks from my home. This past Jan after struggles with the economy, our daughters attempted suicide, 12 year old needing surgery and having to take care of my elderly mother who has dementia we decided to close the store and move it back home. I now only sell online. No craft shows or any of those things. Customers come to my house to pick up their orders etc.
I'm back on my meds now because the stress of dealing with my elderly mother and a bipolar brother who has to control everything has gotten to me. Getting accused of just about everything here and called a liar is just too much. YOu help someone and get a slap in the face like that it makes you not want to help at all anymore.
So now I deal with one problem at a time with my kids and tell everyone else that my kids and my health come first. Fend for yourself!
That brings me to this group trying to see if there are any people out there who have been through similar problems as our oldest son. Just trying to see if there are tests we shoujld get done or things to look out for.
Loads of smiles to everyone! :)
Veronica Davidson
http://www.veronicaslavishlathers.com
To: epilepsy@yahoogroups.com
From: mylmy@bnin.net
Date: Sat, 20 Jun 2009 14:52:10 -0400
Subject: RE: [epilepsy] new with questions
Veronica,
So what kind of symptoms do you have of MS? Have you
had a second opinion?
Millie
>
> Millie,
>
>
>
> that sounds like with MS.. just because the LP comes out negative doesn't
> mean you don't have MS. Just means it didn't show in the LP fluid at the
> time the test was done. I've had MS lesions show up for over 12 years now
> but never had anything in the LP.
>
>
>
> I was amazed when something showed on my EEG. That was the last thing i
> was expecting. I had no idea i had anything in the way of a seizure.
> Hell i never blacked out or had convulsions. I thought my episodes where
> I couldn't communicate well were just due to MS. Momentary Brain farts I
> would call them.
>
> Veronica Davidson
> http://www.veronicaslavishlathers.com
>
>
>
>
>
>
>
>
>
>
> To: epilepsy@yahoogroups.com
> From: mylmy@bnin.net
> Date: Sat, 20 Jun 2009 14:16:42 -0400
> Subject: Re: [epilepsy] new with questions
>
>
>
>
>
>
>
> Hi Veronica,
>
> Welcome to our group. Yes, a lot of things sound familiar but
> not for me-- so I will let whoever experience them tell you.
> I've had EP for 47 years but have learned so much in this group.
>
> I also want to say in case the EEG comes out negative -- that
> doesn't mean he doesn't have EP. That has happened to quite a few.
>
> Millie
>
>>
>> Hi everyone!! Thanks for letting me join your group.
>>
>>
>>
>> I have a few questions and I hope you can all help me out here.
>>
>>
>>
>> First i want to say that this is to do with our 18 year old son... soon
>> to
>> be 19. Wed. night we got a call from his friends that he had a seizure
>> and we had to come get him. My husband and i jumped out of bed and
>> rushed over to get him. HIs friends mother is a retired RN and his
>> friend
>> is currently and RN. They told me that our son had felt a bit dizzy so
>> they told him to sit down. He sat down, body went stiff and his eyes
>> rolled back in his head. THey said he made some weird gergling noises
>> with his mouth and they tried to wake him up. They told me he was out
>> for
>> about 1 to 2 minutes tops. When he came around he was slurring his
>> speach and didn't know what happened. . HE was also very tired and
>> staggering around.
>>
>>
>>
>> We took him right to the ER where he told the ER dr. that he was seeing
>> sparkling lights in his vision for awhile and he kept asking for
>> something
>> to drink and wanted to go to sleep. He was also very hungry. THe ER dr.
>> checked blood and urine for anything that shouldn't be there, meaning
>> drugs and alcohol, as well as checking for infection, high blood sugar,
>> and electrolytes. They did a CT scan to see if he had a tumor or brain
>> bleed but everything checked out fine. THe ER dr. was convinced that he
>> did indeed have a seizure and thought it could have been brought on by
>> his
>> medication Abilify since that was just increased to 30mg's.
>>
>>
>>
>> The ER thought that our son was not in any danger so sent him home wiht
>> us
>> telling us to keep an eye on him, get him to a neurologist and get an
>> EEG
>> done.
>>
>>
>>
>> This was all wed. night so thrusday morning I had our son call his
>> psychiatrist and tell her that he had a seizure and she told him to stop
>> his meds ASAP. I then got him an appointment with a neurologist who
>> squeezed him in for Friday.
>>
>> THe neurologist is convinced that our son simply fainted. BUt wants to
>> get an EEG done to make sure. I'm not all that convinced that he simply
>> fainted. Dr. said that since our son stood up and then felt faint it was
>> most likely that his BP was low and the sudden standing up made him
>> faint,
>> blood rush etc. Our son feels now that he did simply faint.
>>
>>
>>
>> The day after this insident is what gets me. YOu don't have a full day
>> or
>> more after a faiting spelll where your so tired you can barely function
>> and you sleep all day. He also was extremely hungry and thirsty the next
>> day. Reminded me of our german shepard which had seizure disorders and
>> would drink execessively the day after a seizure. Found him face down in
>> the toilet drinking all the time... not that our son has done this
>> lol...
>> But he drank quite a bit on thursday and did nothing but eat, drink and
>> sleep.
>>
>>
>>
>> I myself have had mild electrical brain surges which showed up on an EEG
>> many years ago. This was before i was diagnosed with MS. In my case i
>> would be allert but unable to distinguish what was being said to me. I
>> felt disconnected from my body and when people spoke to me it was as if
>> there was a plate glass window between us. I could see the person talk
>> to
>> me but didn't know what was being said. Almost like being under water in
>> a pool filled with screaming kids.
>>
>>
>>
>>
>>
>> Anyway, i was wondering if anyone had a similar experience as my son
>> did.
>> I'm certainly going to take him for an EEG. I just want to know if
>> anything he experienced would sound familiar and if so how do you know
>> what to look for in the future?
>>
>> Veronica Davidson
>> http://www.veronicaslavishlathers.com
>>
>>
>>
>>
>>
>>
>>
>>
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>
> __________________________________________________________
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