3 months and still in the dark

[blackstamp]

Hi,

I have been here before and got lots of support and advice so back to update. My husband started having his episodes nearly 3 months ago now at the age of 40 they started off mild and have since got stronger with arms jerking and jaw clenched etc his driving licence was taken away which was a very hard time since he can not work without it. Mri was clear but now been diagnosed with temporal lobe epilepsy and starts epilum today. The neurologist said that the epilepsy is separated from his others symptoms which are constant numbness down right side and all over face and back and excessive saliva in mouth and vision is playing up now. These symptoms all started the same time as his episodes so does anyone know what can run along side epilepsy to cause these symptoms? I was told possibly ms but not sure about that. He is due to have a spinal scan first week of August. He refused to go on medication first of all denial big time but has now decided he can't continue feeling the way he does all the time, fuzzy head and feeling like a "child" because not with it all the time. It has been a very hard time and I might sound selfish but have found it so draining especially having 4 children to look after as well but just want it all sorted so we know what we are dealing with and can't stand the not knowing. He is still convinced that if mri scan was clear they might have been too quick to diagnose epilepsy with no medical proof but going to take medication. Maybe someone will read this and have similiar experience with symptoms and can throw some light on it. Sorry for being so lengthy.

Many thanks
Penny

 

[Georgiagirl88]

Hi Penny,

I am so sorry he is still having so many health problems. I really am! I hope it can all be sorted out soon. That makes a world of difference.Just having answers. I am sure it must be hard on both of you..your husband feeling helpless and scared and you feeling the weight of it all and dealing with the children as well. Hopefully, things will settle down soon and answers will come! Before I finished reading your whole post, my initial thought was MS. I know that the MRI can actually be normal in a small % of people, so hopefully the spinal test may answers those questions for you. I have left temporal lobe Ep. as well. I also get complete numbness in my arms and hands. More on the right side. Another question for my next appt. Let us know how everything goes and I will be keeping you all in my prayers.

Michelle

 

[Meetz1064]

Well,

an MRI is not the only test that is used to diagnose ep. An EEG is the primary test that is used to diagnose ep. MRIs are used to look for any physical malformation that cause ep. EEGs measure the brain waves that may or may not be producing epileptiform activity at the time of the EEG test.

HOWEVER---please note that when running the EEG test, IF NO SEIZURE ACTIVITY IS GOING ON AT THAT TIME, THEN THE EEG WILL BE READ AS NORMAL. EEG tests are only a small sample of a person's life. Typically, the ER will or a doctor's office will order up to an hour-long EEG. To get a TRUE picture, it is necessary to have an EEG done for a MINIMUM of AT LEAST 24 to 48 hours. This way, the sleep cycle can be included, as well as ALL aspects of the patient's life.

I, too, have some numbness in my hands. Part of that is from having carpal tunnel, part of it isn't. And went through testing to rule out MS, as I have had ep my entire life. Encourage hubby to look at everything....meds, diet, exercise (yoga, etc) neurofeedback.....he has a lot of options open to him.

 

[RobinN]

What has he done to change his diet?
Something that does not cost a thing would be to stop all food additives (ALL of them), try eliminating gluten and casein for a min of 6 months, and take magnesium. Keep his glycemic level low, and no doctor, that has your husbands health in mind, should argue with this experiment.