Temporal Sclerosis- Information requested

[Haileys Mom]

My Father recently had a car accident, where he had a seizure while driving. Fortunately, he escaped with little injuries and did not hurt anyone.

The Neurologist had 2 EEG's and 3 MRI's done, one with contrast, as far as I know, and what he found was "Temporal Sclerosis". He said most likely he had it since birth, and that it is rare to see symptoms start so late in life (age 67). He said that with this condition, symptoms like seizures start early.

Could anyone give some insight to this, so that I can better understand it? The Dr. is very busy and can only explain it so much, when we are fit in for appts., as I know he has others waiting.

My Dad is now on an anti-seizure medication that will hopefully prevent anymore seizures.

Thank you in advance,
Kelly

[gracelyn]

I have 2 lesions in my right temporal lobe, I have been having some type of seizure, a swimming feeling in on the side of my head, there is no telling when it will happen, most times I get a numbness in my foot that seems to spread up to the base of my skull and on from there. When 911 people get here I usually have low blood pressure, once it was high, by the time I get to ER everything is OK. They do a cat scan and its OK, I have quit taking some of the meds I have been on, I still get these seizures, the first one was really bad as I thought I was having a stroke and this was it, I was going to die, the 2nd one was bad and the past 10 or so I usually can catch when it starts with the numbness in my legs. I have been searching for symptoms for right temporal lobe lesions, 3 yrs ago an MRI found these lesions.

I started having short term memory problems 10 yrs ago, started as minor things like forgetfulness, then progressing to forgeting to go to my best friend wedding, and someone had to call me and ask where I was. Wrok was getting to be too much, I could not concentrate on it anymore, I had to cut my hours.

I am in my 50's female, it is not meno, I was checked for all that years ago, it progressed so bad I had to go into the hospital, telling the doc to please admit me and run tests, I could not keep repeatedly keep appointments and run here and there it was too much thinking and remembering and confusion in my brain, I am beyond distraught with this illness whatever it is.

I have had a spinal tap, about 4 MRI's and another for this week, the docs act like the lesions are nothing of concern.

Its like I have Attention Def, I have never had this, I was an accountant all my life and no way could I have multi-task and been on the ball to do this kind of job, using 99% of brain power.

The doc hints at Bi polar, I honestly cannot believe it, I do not have highs and lows, I think other doctors would have noticed a change in me years ago, in my teens, or when this started.

At present I must take Ritalin so I can function, and lamictal and klonopin and elavil for sleep,  previously I was prescribed Lithium, Adderall, Valpro Acid. The Lithium and Valp acid just made me sick and I felt like I was a zombie. As i mentioned I do not have bi polar illness.

I feel the doc's don't give me an answer, they hint on mini strokes, this all started to happen when I quit getting the Depoprovea patches for birth control or the gas you get at the dentist.

I am disabled now because of this and I just hate it. I worked my whole life. At first I thought I was getting Alzheimers, but apparently not.

If anyone out there can advise me when to go for some help, or a specialist in NY or some doctor who is experienced in this field, I would appreciated, I am so tired of doctors who don't read my charts etc. Its like I go to get the results of some memory tests I had done and they didn't have the file, the doc gets mad cause they can't find the transcribing of it. Or they tell me to make an appointment and then when I get there they ask why am I there, like I just go there for the fun of it, I have to tell them, I had the tests done!!!! I get mad and sometimes it must show, and I have a right to be mad, or they forgot what they prescribed me, they go to give me an RX and I have to tell them" you already gave me that" and then they have to look at their note or charts.

Its like I am in a gray area, and nobody can figure it out, so I search and search on the web for years now with no luck. I need another doctor, I have been to 2 Neurologist and 2 Psych. one psych says I am not bi polar, one says I am, this one neuro assistant seems to help me or acts intersted in my case, she prescribed me folic acid, which seems to help with the morning fog.

I have been to forums, but it seems like all they talk about is drugs, or its all teenagers on ritalin.

I do not like being on ritalin, I just want my life back, I'm just getting too old to be wasting my life on this illness whatever it is.  The doc tells me to just accept it, accept what? Their answers that I have something I know is a wrong diagnosis?  

Any help appreciated.

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   Mesial temporal sclerosis (MTS) is a condition that causes atrophy(shrinking) of a brain structure called the hippocampus.  This is a structure that is deep in the brain and is responsible for memory and often gives rise to seizures if damaged.  The factors that give rise to MTS is often debated, but it is not congential (present from birth).  There is an association with febrile seizures as a baby/infant and MTS with epilepsy later in life, but it does not explain all cases. MTS gives rise to seizures that occur in the temporal lobe (the area of the brain right behing the ear).  MTS often occurs without know cause and can present as a new epilepsy later in life (although the 20-40s would be more common).  Seizure medications such as carbatrol (carbamazapine), trileptal (oxcarbazapine), etc are good choices for this disorder. However, MTS often leads to epilepsy that does not go away with medications alone.  If your father has seizures while on good doses of 2-3 medications, then epilepsy surgery may be the best option for him. You should take precautions that he avoid bathing alone, working with heavy equipment, working around ladders or heights, and he should not drive until cleared by a physician.  Depending on the medication he is started on, he may also need a supplement to prevent bone loss (osteoporosis) your neurologist will know.
I hope this has been helpful.

[johnflox]

Was your father on any medication? Many of them cause seizures of central nervous system disorders with a tendency towards seizures. This can happen up to a few months after completing a treatment with really a myriad of drugs. The older the person, the most likely to happen.