So fed up with doctors!

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I was diagnosed with seizures in October 2015, that was after years of not knowing what was going on. I thought I had finally found out why I was always feeling weird in my head. I was optimistic about my treatment and was willing to take my first ever daily medicine. All though I still do not like medicine I am so grateful for it now. The neurologist that diagnosed me never explained what kind of seizures I was having. Only did the 30 minute eeg in his office (abnormal) and my symptoms, when the keppra alone stopped working (small dose) he ordered another eeg and it was also abnormal. In March, I decided to switch neuros because all this doctor was doing was giving me more medicine to add on to my keppra over the phone. tried lamactil, trileptal, and zonegan with the keppra but I kept getting the rash after 2 weeks on the meds. Anyway I made an appointment in a big city 3 hours away. the first thing this neuro said was he wanted to find the cause of these seizures. Again I was so optimistic about this doctor. He ordered an MRI and a 72 hour ambulatory video eeg. Follow up appointment was 5 weeks after first visit. As much as I hated the other doctor for giving me medicine over the phone, I called this new neuro to tell him I felt like I was having the episodes back to back for hours. I wanted to see if we could increase the keppra. He told me no. The MRI showed I have left mesial temporal sclerosis. And the EEG was again abnormal but detected no seizures. Finally get to go the 3 hours away for him to follow up and explain my test results. He stays in the room with me for 10 minutes only to say that he does not think it's epilepsy, but he increased the keppra. OK?!! Why? He said I still cannot drive, which is ok for me and I completely understand but he said my state says it is against the law, it is not. He says he had to leave so he rushed through my appointment. And referred me to his partners, a neuropsychologist and another neuro to test my nerves. because I complained about neck, back pain and burning skin. I've decided not to see him again and have made an appointment with another neuro only an hour away. I feel like a crazy person switching doctors but I need one that is going to figure this out and not put me off on another doctor of the same specialty. Now I have to wait a whole month before seeing the new doctor. I just want to get back to my life!!! I just want to know what the hell is going on with me!! On the upside the increase and keppra has been helping. My head hasn't felt weird in a week but I have been waking up stiff as a board and bad neck and back pain. I'm going to ask the new doc if it could possible be MS. Thanks for reading my ramblings..

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Fed up with doctors!!!!It

Submitted by just_joe on Fri, 2016-05-13 - 15:43

Fed up with doctors!!!!It took over 2 years to get a reason and full diagnosis. If you have had 2 seizures then the diagnosis is epilepsy. My diagnosis was before the neurologists went into specialities. Grand Mal, Petite Mal and Focal MOtor Epilepsy. TodayI can have almost every seizure listed. All of the ones I have had in the last 10 years have been simpal partial thoWere any of the neurologists specialists in elilepsy??? If not then I can see why you might be fed up with doctors.The EEG has abnormalities which shows the electrical output coming from your brain. Depending on the type of neurologist those abnormalities can vary to different types of things coming from your brain. Epilepsy is only once of them/ Keppra is becoing th go to medication for different types so seizures. Now if the doctoe sees the abnormalities he knows where they came from. That does not mean he can tell the type of epilepsy or the different types of seizures you can have. Your symptoms can help determine that, The different things happening in your seizures can also tell what type of seizure you may have. Now it does take time for medications to get to the therapeutic levels in your body the neurologist wabts. Side effects do happen and if within the forst 4 weeks you may have some but they generally go away afterr that time period. Any changes in dosages or medications and the time period starts again.The medication being added did not he;lp because the levels had not been set and without a time period of them being with keppra there was no way to tell is they had reduced the number of seizures any. The doctor to an increase was doing what he thought needed to be done. Especially since he needed to get the therapeutic levels set and give it 4 keeks to find out if that dosage wasreducing the number of seizures. The MRI showed nesiak temporal sclerosis. because it could be seen. Now he said he doesn't hink it is epilepsy. That is why I question if he is a specialist. You have set an appointment with another neurologist which is fine. Wait for that one. But while waiting do some research I copied this from just typing in mesial temporal sclerosis. Do the smae thing and hit enter. From what you posted before that it is feft temporal lobe. Just from what I copied yo umay have temporal lobe epilepsy. But please don't quote me since I am not a doctor. This site has information on mesial temporal sclerosis too because it can be associated with epilepsy. Medications are the first treatment to any seizuresI would also suggest you get the EF My Epilepsy Diary. watch the video. In it they have a note pad which can be used to post things that happened during the day. The number of seizures your mood and otherr things. It can help you when discussing things with your new neurologist. Also let hm know about the tests you have had. If you can go get copies which yo ucan give the new beurologist or he may be able to get them from th other neurologisysAlso take a person with you I have many times. The neurologists tend to listen more. If you like this new one then by all means keep a good realtionship with them because if you do they will answer questions. It may be their assistans talking but the questions are given to the doctors. The neurologists that retired on me last july answered some of mine back in the mid 80'sHe said I still cannot drive, which is ok for me and I completely understand but he said my state says it is against the law, it is not. Ask the new neurologist if in the same state he will know.At every visit I have questions. And for each question they I have another question. Always ask questions. Oh and if someone close to you goes let them ask a few too that way the neurologists another point to view. what a husbnad said does make a difference.I hope this helpsJoeDO research mesial temporal sclerosis you may see a lot of things.John Hopkins MedicineNeurology and NeurosurgeryWhat is mesial temporal sclerosis?Mesial temporal sclerosis (scarring in the inner portions of the temporal lobe) may be caused by oxygen starvation to the brain, head trauma, or brain infection, but can also occur without an apparent cause.Over time, neurons die and scar tissue tends to form within the hippocampus and amygdala (areas in the temporal lobe responsible for emotions and short-term memory).Mesial temporal sclerosis (also known as hippocampal sclerosis) can cause a form of temporal lobe epilepsy with partial (focus) seizures that can spread or secondarily generalize and affect other areas of the brain.Treatments for temporal lobe epilepsy caused by mesial temporal sclerosis

Fed up with doctors!!!!It took over 2 years to get a reason and full diagnosis. If you have had 2 seizures then the diagnosis is epilepsy. My diagnosis was before the neurologists went into specialities. Grand Mal, Petite Mal and Focal MOtor Epilepsy. TodayI can have almost every seizure listed. All of the ones I have had in the last 10 years have been simpal partial thoWere any of the neurologists specialists in elilepsy??? If not then I can see why you might be fed up with doctors.The EEG has abnormalities which shows the electrical output coming from your brain. Depending on the type of neurologist those abnormalities can vary to different types of things coming from your brain. Epilepsy is only once of them/ Keppra is becoing th go to medication for different types so seizures. Now if the doctoe sees the abnormalities he knows where they came from. That does not mean he can tell the type of epilepsy or the different types of seizures you can have. Your symptoms can help determine that, The different things happening in your seizures can also tell what type of seizure you may have. Now it does take time for medications to get to the therapeutic levels in your body the neurologist wabts. Side effects do happen and if within the forst 4 weeks you may have some but they generally go away afterr that time period. Any changes in dosages or medications and the time period starts again.The medication being added did not he;lp because the levels had not been set and without a time period of them being with keppra there was no way to tell is they had reduced the number of seizures any. The doctor to an increase was doing what he thought needed to be done. Especially since he needed to get the therapeutic levels set and give it 4 keeks to find out if that dosage wasreducing the number of seizures. The MRI showed nesiak temporal sclerosis. because it could be seen. Now he said he doesn't hink it is epilepsy. That is why I question if he is a specialist. You have set an appointment with another neurologist which is fine. Wait for that one. But while waiting do some research I copied this from just typing in mesial temporal sclerosis. Do the smae thing and hit enter. From what you posted before that it is feft temporal lobe. Just from what I copied yo umay have temporal lobe epilepsy. But please don't quote me since I am not a doctor. This site has information on mesial temporal sclerosis too because it can be associated with epilepsy.  Medications are the first treatment to any seizuresI would also suggest you get the EF My Epilepsy Diary. watch the video. In it they have a note pad which can be used to post things that happened during the day. The number of seizures your mood and otherr things. It can help you when discussing things with your new neurologist. Also let hm know about the tests you have had. If you can go get copies which yo ucan give the new beurologist or he may be able to get them from th other neurologisysAlso take a person with you I have many times. The neurologists tend to listen more. If you like this new one then by all means keep a good realtionship with them because if you do they will answer questions. It may be their assistans talking but the questions are given to the doctors. The neurologists that retired on me last july answered some of mine back in the mid 80'sHe said I still cannot drive, which is ok for me and I completely understand but he said my state says it is against the law, it is not. Ask the new neurologist if in the same state he will know.At every visit I have questions. And for each question they I have another question. Always ask questions. Oh and if someone close to you goes let them ask a few too that way the neurologists another point to view. what a husbnad said does make a difference.I hope this helpsJoeDO research mesial temporal sclerosis you may see a lot of things.John Hopkins MedicineNeurology and NeurosurgeryWhat is mesial temporal sclerosis?Mesial temporal sclerosis (scarring in the inner portions of the temporal lobe) may be caused by oxygen starvation to the brain, head trauma, or brain infection, but can also occur without an apparent cause.Over time, neurons die and scar tissue tends to form within the hippocampus and amygdala (areas in the temporal lobe responsible for emotions and short-term memory).Mesial temporal sclerosis (also known as hippocampal sclerosis) can cause a form of temporal lobe epilepsy with partial (focus) seizures that can spread or secondarily generalize and affect other areas of the brain.Treatments for temporal lobe epilepsy caused by mesial temporal sclerosis

Fed up with doctors!!!!It took over 2 years to get a reason and full diagnosis. If you have had 2 seizures then the diagnosis is epilepsy. My diagnosis was before the neurologists went into specialities. Grand Mal, Petite Mal and Focal MOtor Epilepsy. TodayI can have almost every seizure listed. All of the ones I have had in the last 10 years have been simpal partial thoWere any of the neurologists specialists in elilepsy??? If not then I can see why you might be fed up with doctors.The EEG has abnormalities which shows the electrical output coming from your brain. Depending on the type of neurologist those abnormalities can vary to different types of things coming from your brain. Epilepsy is only once of them/ Keppra is becoing th go to medication for different types so seizures. Now if the doctoe sees the abnormalities he knows where they came from. That does not mean he can tell the type of epilepsy or the different types of seizures you can have. Your symptoms can help determine that, The different things happening in your seizures can also tell what type of seizure you may have. Now it does take time for medications to get to the therapeutic levels in your body the neurologist wabts. Side effects do happen and if within the forst 4 weeks you may have some but they generally go away afterr that time period. Any changes in dosages or medications and the time period starts again.The medication being added did not he;lp because the levels had not been set and without a time period of them being with keppra there was no way to tell is they had reduced the number of seizures any. The doctor to an increase was doing what he thought needed to be done. Especially since he needed to get the therapeutic levels set and give it 4 keeks to find out if that dosage wasreducing the number of seizures. The MRI showed nesiak temporal sclerosis. because it could be seen. Now he said he doesn't hink it is epilepsy. That is why I question if he is a specialist. You have set an appointment with another neurologist which is fine. Wait for that one. But while waiting do some research I copied this from just typing in mesial temporal sclerosis. Do the smae thing and hit enter. From what you posted before that it is feft temporal lobe. Just from what I copied yo umay have temporal lobe epilepsy. But please don't quote me since I am not a doctor. This site has information on mesial temporal sclerosis too because it can be associated with epilepsy. Medications are the first treatment to any seizuresI would also suggest you get the EF My Epilepsy Diary. watch the video. In it they have a note pad which can be used to post things that happened during the day. The number of seizures your mood and otherr things. It can help you when discussing things with your new neurologist. Also let hm know about the tests you have had. If you can go get copies which yo ucan give the new beurologist or he may be able to get them from th other neurologisysAlso take a person with you I have many times. The neurologists tend to listen more. If you like this new one then by all means keep a good realtionship with them because if you do they will answer questions. It may be their assistans talking but the questions are given to the doctors. The neurologists that retired on me last july answered some of mine back in the mid 80'sHe said I still cannot drive, which is ok for me and I completely understand but he said my state says it is against the law, it is not. Ask the new neurologist if in the same state he will know.At every visit I have questions. And for each question they I have another question. Always ask questions. Oh and if someone close to you goes let them ask a few too that way the neurologists another point to view. what a husbnad said does make a difference.I hope this helpsJoeDO research mesial temporal sclerosis you may see a lot of things.John Hopkins MedicineNeurology and NeurosurgeryWhat is mesial temporal sclerosis?Mesial temporal sclerosis (scarring in the inner portions of the temporal lobe) may be caused by oxygen starvation to the brain, head trauma, or brain infection, but can also occur without an apparent cause.Over time, neurons die and scar tissue tends to form within the hippocampus and amygdala (areas in the temporal lobe responsible for emotions and short-term memory).Mesial temporal sclerosis (also known as hippocampal sclerosis) can cause a form of temporal lobe epilepsy with partial (focus) seizures that can spread or secondarily generalize and affect other areas of the brain.Treatments for temporal lobe epilepsy caused by mesial temporal sclerosis

it they treat epilepsy then

Submitted by just_joe on Sat, 2016-05-14 - 15:20

it they treat epilepsy then they should have knows this Mesial temporal sclerosis (also known as hippocampal sclerosis) can cause a form of temporal lobe epilepsy with partial (focus) seizures that can spread or secondarily generalize and affect other areas of the brain.Treatments for temporal lobe epilepsy caused by mesial temporal sclerosis in the 80's neurologists started specializing. some just stay as neurologists. Specialists have more knowledge and can get better information on their specialty. SO follow my suggestions and go to your meeting. If you have the tests or answers to them take them with you. If possible do take someone with you who can tell the neurologist what things are like when you are in a seizure. Hearing things from the point of another person that saw it does help. I have a visit with a new epilepsy specialist last January. Doc retired last July. She is good and I took a great friend with me. When she asked what I was like when I was in a seizure he states" A little goofier then he is now" which is true Doctors can be serious and at times they have to be. But if you are serious a laugh can help ease the pressure and stress. Believe me I have always taken stress out... Hey Mom the next time a have a seizure in the bath tub add a little That may sound bad more hot water some tide and throw in my good pair of jeans" .To some it may sound bad. but understand my diagnosis was back in 64. No computers,911 didn't exist.