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Old 04-16-2005, 10:21 AM   #1
Member
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Join Date: Oct 2002
Location: Quebec
Posts: 57
Lonelysun HB User
Unhappy New Here.......

Hi everyone new , was just dxs in Feb 2005, so everything is new to me......I ve been passing out for the last 3 years always just for few seconds and then dxs me with MS In the last few months I have been having seizures that last over a hour and Im black and blue all over and extremely tired.......I take 300 mg of dilatin a day so Im hoping that will stop the seizures......The only problem is that its very hard on my liver and even more so because of the shot I take for the MS......This might be a silly question but important to me because I love doing it.......Dose any one still bike........with the Ms my legs tire fast but Im nervous about using my bike....planned to get helmet and protective gear....and I only use my bike to go over to the store......not for long trips....sorry this is so long...take care Susan

__________________
Im to have a MRI done next month.
Could anyone tell what it is exactly this tes
and what would they be looking for,
I did have a stroke last April, been passing our and
headaches....On meds for all 3.
Thanks for any help

 
Old 04-16-2005, 11:19 AM   #2
Senior Member
(female)
 
Join Date: Apr 2004
Location: Scotland
Posts: 115
Eilidh1 HB User
Re: New Here.......

Hi Susan,

Welcome to the board - I hope you'll find it a great source of comfort, support and info, as most members do. Incase you haven't already read it, Lisa T just recently created a thread called "Lots of new names around, roll call anyone?" and a load of people have introduced themselves on it - it'd be a great way to find out about everyone. Concerning your bike question, I don't have personal experience with it, I have a fear of bikes... Weird perhaps but maybe handy if you're epileptic. Gotta dash now, but welcome again to the board.

Best wishes,
Eilidh
x

 
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Old 04-16-2005, 11:50 AM   #3
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Join Date: Oct 2002
Location: USA
Posts: 292
Phoebe HB User
Re: New Here.......

Do you have an Epileptologist treating your seizures? Dilantin is very old, probably very cheap drug, but there are others that may be more effective without impacting your liver. Unless the Dilantin stops your seizures completely, it isn't worth the risk to your liver to take it. I have a feeling that the same doc treating the MS may be treating your seizures. Both of thiose areas are Specialties unto themselves. Are you positive your have MS? There are so many cases of misdiagnosis regarding seizures since they present themselves in so many ways that are not necessarily easy to identify. It is very important to have the accurate diagnoses so that you can receive the corect treatment. The wrong drug for your seizures can make things worse. Welcome. Phoebe

 
Old 04-16-2005, 01:25 PM   #4
Member
(female)
 
Join Date: Oct 2002
Location: Quebec
Posts: 57
Lonelysun HB User
Re: New Here.......

As for MS yes they are sure that I have it........went through a multitude of test to makes sure it wasn t something else ...I have a multitude of lesions on my brain........and I agree with you ......I will be seeing my doctor next month and Im going to ask her to change meds ....can you give me names of different meds that I can write then down and find any information about them so when I do go.....so I would have the information about them......thanks for the welcome.........
__________________
Im to have a MRI done next month.
Could anyone tell what it is exactly this tes
and what would they be looking for,
I did have a stroke last April, been passing our and
headaches....On meds for all 3.
Thanks for any help

 
Old 04-16-2005, 02:37 PM   #5
Inactive
 
Join Date: Oct 2002
Location: USA
Posts: 292
Phoebe HB User
Re: New Here.......

Meds. AEDs, are prescribed based on the type of seizure. Not all of them are recommended for all seizure types. What type of seizures are you having? You also try to find the specific meds that stop our seizures. It is different for each person in a large sense and is specific to the individual. We really do not pick and choose what we want unless we do have a choice. Sometimes we do, but many times we don't. It is important to try meds that are specific to your seizure type however. Then the trial begins at that point. Phoebe

 
Old 04-16-2005, 02:56 PM   #6
Member
(female)
 
Join Date: Oct 2002
Location: Quebec
Posts: 57
Lonelysun HB User
Re: New Here.......

Im slowly learning that and I would like very much to get off the Dilatin because of the damage it could do to my liver........and since I ve been on it Im still having seizures and I don t know what kind of have......which bothers me.
__________________
Im to have a MRI done next month.
Could anyone tell what it is exactly this tes
and what would they be looking for,
I did have a stroke last April, been passing our and
headaches....On meds for all 3.
Thanks for any help

 
Old 04-16-2005, 05:39 PM   #7
Newbie
(male)
 
Join Date: Apr 2005
Posts: 3
ASurvivor HB User
Re: New Here.......

My friend has MS so your post caught my eye. Anyway...have you had your liver enzymes checked? I ask because other epilepsy drugs can cause liver problems too. My doc told me Lamictal and Depakote can and there may be more. I get checked periodically on Lamictal and so far so good.
Good luck.

 
Old 04-17-2005, 08:19 AM   #8
Member
(female)
 
Join Date: Oct 2002
Location: Quebec
Posts: 57
Lonelysun HB User
Re: New Here.......

Hi I go monthly......hoping that I will find another drug that will help but not do harm to my liver.....take care Susan
__________________
Im to have a MRI done next month.
Could anyone tell what it is exactly this tes
and what would they be looking for,
I did have a stroke last April, been passing our and
headaches....On meds for all 3.
Thanks for any help

 
Old 04-17-2005, 07:16 PM   #9
Junior Member
 
Join Date: Jul 2003
Location: Cape Cod, Ma.
Posts: 30
Kramer HB User
Re: New Here.......

There are pros and cons to different drugs. Lamictal gives me concentration problems, otherwise it is ok. It is used for a variety of seizure types. I took Dilantin for many years, and would still be taking it, but a new neurologist favored the newer generation of drugs. Your doctor should have ordered a Dilantin level at the lab. 300mg. is not enough for some people. A therapeutic level is generally thought to be between 10 and 20.

 
Old 05-11-2008, 03:48 AM   #10
Junior Member
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Join Date: Nov 2007
Location: Albany, NY
Posts: 10
gary33 HB User
Smile Re: New Here.......

Lonelysun, I have been on Dilantin for 30 years and had all the symptoms of MS, leg weakness, double vision, ear ringing, imbalance which seemed progressive over the years. Then one morning it was so bad I went to the ER. But I didnt have MS at all. The ER the doctors agreed with the symptoms but they found my Dilantin levels were 4 times as high as they should have been. The reason I found out was two fold 1) prolonged use of dilantin causes MS symptoms, and I was taking aspirin at the same time, which elevates Dilantin levels in the bloodstream. (researchers I found out believe it binds to the same protein that eliminates dilantin from the bloodstream). So I went off Dilantin, which in just weening off the drug caused some siezures, all in the morning within the first 2 months. But once I got through them and onto the other medication Keppra, I felt great. Now all of the symptoms are gone, I also feel more alert, unconfused. The change was incredible...So I would not advise anyone to go on Dilantin with all of the other newer drugs available.

 
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