Intro: New Member

[StephL]

Hi Everyone,

My name is Stephanie. I'm 50 years old and have a son who is in college. I've been reporting my symptoms to my doctors but haven't gotten a diagnosis yet. About two years ago, I started collapsing periodically. I lose balance easily and often stagger or misjudge where I am in my personal space, ie: bumping into furniture or missing a doorway. Sometimes my knees buckle on steps and I clutch the handrail, afraid that I may tumble forward down the steps. I have episodes where my right foot goes wild with jerky involuntary movements. At the computer my right fingers involuntarily click the right mouse button which drives me crazy. lol In addition I have periodic trouble with my speech and sometimes understanding language. It's always easier to type. I think I might be having night time seizures because I often wake in a stupor and it can take me all morning for my mind to clear. This is having such a huge impact on my life. I dread taking a shower, going out by myself or having conversations with others since I can't always maintain the flow of conversation. I have an auto-immune disorder that can cause lesions in the brain and spinal cord. Anyway, this is all new to me and I'm not quite sure what it is but some of it seems fit the description of simple partial seizures. Does all this sound typical or am I way off?

Regards,

Steph

 

[epileric]

Welcome Steph

I've always had problems with my perception in that my judgement of how far or close something is is way off, especially when I'm tired. because of that I often bump into things. What I hate the most is when my shoulder catches the doorpost as I go through the door.

The twitching you described to me could be epilepsy or it might be something like MS or Parkinsons (remember I'm no doctor). Have you gone through any testing yet to see what might cause these symptoms? You should at least get an EEG & MRI.

Also keep track of your symptoms on a calendar as well as what/when you eat, sleep, and how you're feeling throughout the days. It might help pinpoint if any food/behaviour etc might be contributing to these symptoms.

Meanwhile welcome to the site, have fun exploring it. There's lots of info in the library that might help you out.

 

[Nakamova]

Hi Steph, welcome to CWE!.

Eric makes some good points. Your symptoms indicate something neurological in origin. And your autoimmune disorder is a likely suspect. Brain lesions can lead to seizure disorders. Depending on where the lesions are, they may be triggering particular symptoms related to motor control. An MRI or EEG should provide more information.

Best,
Nakamova

 

[Kansas Educator]

Good points made above. I have antiphospholipid antibody syndrome (also autoimmune) and my first symptom was an unexpected complex partial seizure. I now take treatment for that along with an AED and have had no other episodes.

 

[behlen]

I can relate to the twitching. I also have difficulty with the mouse form time time, I have been diagnosed with partial complex seizures. Not sure if that is what your issue is but would def look into it. It wasn't until I had a grandmal seizure, a unneeded pace maker implant of two different nuerologists that I learned what was wrong with me. So def find a good nuero doctor and get some test done.

 

[StephL]

I'm trying to go over past events and sort it all out in my mind. One thing I forgot to mention is clumsiness. I drop things from my hands, spill food and beverages on myself, and often misjudge where the edge of the counter or table is so everything seems to end up on the floor. I live alone and there's no one here to observe me. I wonder if I do lose consciousness and don't know it. My front teeth are cracked and have chipped and I'm not sure how that happened. One thing that puzzles me is for the past two years, why do I get dizzy when I'm sleepy? There are times I cannot resist sleep and I will sleep for an unusually long night (or all day) and wake feeling worse than when I went to sleep. My doctors don't take any of this seriously. I know I need to see a neurologist. I guess I should be depressed or angry, going through the stages of grief or something but I'm not. I enjoy every day of my life and I'm basically a happy person. I guess I am a little angry at my doctors tho. lol

 

[PhylisFeinerJohnson]

Stephanie, do you have a good doc yet? For a Comprehensive List of GOOD Neurologists, Epileptologists and Neurosurgeons -- compiled by eforum members of the EFA, based upon positive personal experiences, go to: http://www.coping-with-epilepsy.com...ileptologists-neurosurgeons-pediatric-d-9275/

P.S. I walked into a wall the day after I had my nose fixed. And I still walk into things 40 years later!

Hope your problems are resolved.

 

[RobinN]

Hi Stephanie - Welcome to CWE

The unknowing was the scariest point of this journey for me. However, I wasn't given the best of information from the medical community. Of course I followed their advice and care. We were talking about something very precious to me... my daughter. I have come away from the doctor's appointments disappointed many times. Being proactive and keeping incredible records, (a calendar with notes) led me to our answers. It was rare that any of the specialists offered anything other than medication and the normal rounds of testing. It all is necessary, but so is learning as much as you can about your individual situation.

For us finding alternative therapies has been a life saver. Nutrition over time has improved her health, neurofeedback has helped to stabilize her brain function, and supplements have been needed to support the healing necessary to see positive results. It has taken a couple of years, but we continue to see improvement, so I know we are on the right path.

It is important to have doctors that are open to ALL ideas, not just medication and surgery. The test are important so that you can eliminate life threatening situations. However, if they are not able to offer any improvements in the quality of your life, it is time to be proactive.

That is my opinion.