msliz
11-20-2004, 08:21 AM
I am new here and totally confused at this point. I have MS and just had a visit with a new MS neuo. I knew I had had a couple of seizures, but it had been put down to having ms.
I have been told by my neuo that I have epilepsy and that a lot of the
sx I am having are due to epilepsy and not the ms. He said there are huge scars on my brain in places that always cause epilepsy.
He feels like I am having quite a few seizures. he has explained to me that there are all kinds of seizures and some of them only last for seconds and I may not be aware of them.
He also says I have a basilar migraine disease in my brain.
He seems to be the most concerned about the epilepsy right now and is changing my medication. I was on a low dose of trileptal for seizures.
He is changing that to a much higher dose of Topamax. I have to gradually
change these out and he said he may add something else too. Are any of you taking Topamax?
Now, I wonder how I know what is what??
Everthing that I thought was ms sx was not all due to ms??
Does having epilepsy cause the same things: Balance problems, unable to walk on some days, weakness in arms and legs, grasping problems,
unable to think, unable to say the correct word, forgetfulness,
can't stand noise or light?? The list is very long.
I sure would appreciate any help I could get from ya'll.
Liz
I have been told by my neuo that I have epilepsy and that a lot of the
sx I am having are due to epilepsy and not the ms. He said there are huge scars on my brain in places that always cause epilepsy.
He feels like I am having quite a few seizures. he has explained to me that there are all kinds of seizures and some of them only last for seconds and I may not be aware of them.
He also says I have a basilar migraine disease in my brain.
He seems to be the most concerned about the epilepsy right now and is changing my medication. I was on a low dose of trileptal for seizures.
He is changing that to a much higher dose of Topamax. I have to gradually
change these out and he said he may add something else too. Are any of you taking Topamax?
Now, I wonder how I know what is what??
Everthing that I thought was ms sx was not all due to ms??
Does having epilepsy cause the same things: Balance problems, unable to walk on some days, weakness in arms and legs, grasping problems,
unable to think, unable to say the correct word, forgetfulness,
can't stand noise or light?? The list is very long.
I sure would appreciate any help I could get from ya'll.
Liz
Sponsor
radasjewel
11-21-2004, 09:47 AM
Hi Liz,
I am sorry to hear about your situation but from what side effects you mentioned it is possibile that the majority of them could be linked to Epilepsy. I have had E my whole life and have found there is much more to it than just having the odd siezure. Balance and co-ordination have always been a major prob for me. I cant walk a straight line with out wobbling off the mark, needless to say I am extensivly clumsy. Often I find myself feeling very weak in general and nearly all the time my speech comes out back to front or jumbled into some unregognizable sound, my thought process is very slow sometimes and it takes me about 3 or 4 times to register things. Recalling the information can sometimes take longer but I know its there, my short term memory is hopeless but my long term one is brilliant, so in short if you told me something today chances are I would remember it better in about 5 years time. The best discription is like a filing cabinet that has been upended and you ask me to find 1 page out of thousands. That is my mind. So as you can imagine forgetfulness is also at the top of the list. In answer to most of your questions yes alot of what you said can be linked to Epilepsy. The other thing is too after you have a siezure weather it be a big one or a minor one you normally get a headache and they are normally pretty intense. I am normally very tired and can sleep any where between 2hours for a minor and up to 2 days for a major siezure. Has you doc mentioned what sort of Epilepsy you may have? I have not been on Topamax so I can't say what it is like but if they are able to manage the Epilepsy better you might be pleasantly surprised that your MS is not as advanced as you might think. I do know from what my specialist said that there is a link between the 2 conditions and it is not unheard of for people to have both. If you have anymore questions I will be happy to help and I am sure most people here would like to help as well.
Lori
I am sorry to hear about your situation but from what side effects you mentioned it is possibile that the majority of them could be linked to Epilepsy. I have had E my whole life and have found there is much more to it than just having the odd siezure. Balance and co-ordination have always been a major prob for me. I cant walk a straight line with out wobbling off the mark, needless to say I am extensivly clumsy. Often I find myself feeling very weak in general and nearly all the time my speech comes out back to front or jumbled into some unregognizable sound, my thought process is very slow sometimes and it takes me about 3 or 4 times to register things. Recalling the information can sometimes take longer but I know its there, my short term memory is hopeless but my long term one is brilliant, so in short if you told me something today chances are I would remember it better in about 5 years time. The best discription is like a filing cabinet that has been upended and you ask me to find 1 page out of thousands. That is my mind. So as you can imagine forgetfulness is also at the top of the list. In answer to most of your questions yes alot of what you said can be linked to Epilepsy. The other thing is too after you have a siezure weather it be a big one or a minor one you normally get a headache and they are normally pretty intense. I am normally very tired and can sleep any where between 2hours for a minor and up to 2 days for a major siezure. Has you doc mentioned what sort of Epilepsy you may have? I have not been on Topamax so I can't say what it is like but if they are able to manage the Epilepsy better you might be pleasantly surprised that your MS is not as advanced as you might think. I do know from what my specialist said that there is a link between the 2 conditions and it is not unheard of for people to have both. If you have anymore questions I will be happy to help and I am sure most people here would like to help as well.
Lori