Myclonus / Jerks or Seziures

[brknarow22]

I am a 39 year old female. I have had Epilepsy since I was 7. I have Grand and petit mal seziures. These are controlled by my medication which is phenobarbital. 120mg once a day. I also have one kidney and a history of kidney stones. About 2 months ago I started not feeling well. Tired all the time, constant abdominal pain that eventually landed me in the ER. We all that though i was passing a kidney stone. But two weeks post ER is what it took to maybe have half wind in my sails. I went to my GP. With this list of complaints / symptoms in the preceeding weeks

One time compelte loss of vision. ( maybe lasitng one minute )
Ocassional blury vision
Headaches.
Pain all abdiminal and lower back.
Mild tremors
Jerking limbs
Abnormal bowel movements
Dizzy
Off balance/ running into things.
Weak/ fatigue.
Feeling feverish but no fever / just flush all the time.
Pain under my rib cage ( more sig on right side )

[Abhijeet Ghosh, MBBS,DNB]

Dear Friend,
You are really brave and i must admit that you have really narrated your feelings/problems very nicely.But i am deeply concerned about the fact that you are thinking too much and not trusting your Neurologist.The more your brain does over activity (of not trusting/more and more opinions/not following the doctor's advice), the more chances are that you will get repeated fits/epilepsy attacks.Because the attack is triggered by over-activity in the brain.
And trust me, the treating doctor is the best person t give you the correct advice, as he has seen you/examined you and cross-verified the signs and symptoms of your problems with the medical reports.So you really got to believe in his treatment.
However, if your mind still doesn't allows that,please don't wait for the second opinion.The point is,you need to believe in the treatment given by your treating Neurologist.If it was a GP's advice, i would had still questioned, but neurologist is the best person to treat you because you have a real mixed symptoms along with a family history.
Also, a stress free sleep can do wonders.
I hope you understood my point.Please don;t feel upset, but you need to trust your treating doctor......
Feel free to discuss more.
Regards.

[brknarow22]

Im sure there is more nut that is roughly it. In ther ER we thought it wa a kidney stone. Going on that I figured after a few days I would feel better but that did not happen. So i saw my GP. Oh the Cat Scan in the ER found my kidney clear of any stones. Fluid in pelvic area was seen but internal ultra sound showed all was ok.  Of the above list she ordered a ultra sound of my abdomen. Awaitng those result. All blood chemistry was flne. Epilapsy medicline level also fine. No abnormalities. She prescribed me flexiril to take at might for my back. That night i kept voolently jerking awake as I feel asleep. We dicontinued me taking that but now I have these jerks all day just more mild. Depending on how many I have they leave me very tired and impair my thinking and speach. My GP was uncertain if the episode at night was related to the flereril or not. She sent me to my nuerologist. Gave him most of the above list as well. He says it was just a raction to the drug but that my other jerks might not be. He took more labs to check all common thing phenobarbital depleats or effect. Vit B Calcuim, magnesium thyroid, D, etc etc. All test were perfect / no defiencies. I tought I understood him to say if they were to find a deficiency of some sort they would treat these jerks as a syndrome but if they found no deficency they would treat them as a sezuire. Now he has had they are not sezuires and he belives they are just related to my epilepsy. He has given me the option to take meds or not take meds for it. Up to me / if i can live with it or not. As far as the tremors go he says they are mild ( which they are at present ) and he is not concerned. I feel like they have done every test possibly on my blood but not looking at my head. I am fnding it difficult to make a decision on wether to take medicine for this or not without firther testing but he feels his physical exam was enogh to conlude what they / where the jerk are comming from. I dropped and gym weight bench on my head a few years back and at the time my then DR was not concerned. Im wonder if maybe I did do some dmage but my now DR is not concerned with that either. I am also concerened that maybe it is not just related to my epilepsy. My mother died at 50 with MS and my father has Parkinsons. They also are not concerned about that. Can anyone weight in with their opinion it woudl help me out. Opinion are just that but never hurts to collects them. I tried to gain a second opion and pay a nueologist as a cash cusotmer outside of my HMO and ws turned down by three nuerologist.How does one get a second opinion when they belong to a HMO? It seems to me I can not.

[brknarow22]

I forgot numbness....in head arms and legs. Sometimes almost my whole body feels numb at once. But when it is my head it if after a tingling or pain that feel vice grip that happens inf a few differnt spots and as it grows is accompanied by moderated to sever dizziness ( near throw up ). It does not matter is I am sitting or standing. it just comes on when ever it wants but in geneal all symptons.... morning ar ok. Start to feel bad and begin jerking by about noon and night time is the worst and my head is so not "clear" by then and have cognitive and motor issue speaking and then small motor hand stuff hard to do or struggle to.