[susiemagoo]

Hello,
I'm usually on the Myasthenia Gravis page -- my son was d/x'd with MG at the age of 10. It was rough getting a d/x for him, which brings me to my story.

A few weeks ago I was on a flight, with a woman and her daughter sitting next to me. The woman told me her daughter, age 18, had been having seizures for the past 1.5 years. Her daughter would pass out and when she "came to", she would be unable to speak for a few minutes. Also, her legs would be weak or paralyzed. The girl had two such episodes during our 45 minute flight. Her legs were feeling weak when the plane landed, so the flight attendant called for a wheelchair.

The mother and daughter were on their way to Mayo Clinic, where my son had been 7 years ago. The Mayo "gods" had pronounced my son's problems as being psychiatric. Two hospitals and numerous doctors later, my son got the MG diagnosis.

I have kept in touch with this family since we parted ways at the airport. Mayo did the usual tests and pronounced the daughter as having psychiatric problems. Her EEGs have been normal, an EMG was normal, blah, blah, blah. The family is flying back home tomorrow, very frustrated. They did the psychiatrist evaluation months ago, which showed the daughter to be normal.

I kept my sanity during my son's two week stay at Mayo by the braintalk forum. I am determined to help this poor girl and her mother, as other MG patients helped my son and me.

One other thing -- the mom told me that her daughter also has episodes of her feet turning bright red. Sounds like Raynaud's Syndrome to me, which
indicates something autoimmune going on. My son has RS also, as does my sister who also has Lupus.

If these symptoms ring a bell with anyone, please drop me a line. Also, can you have seizures without them showing up on the EEG? I've run across Todd's paralysis during some of my internet searches. Don't know if that explains the residual weakness in one of this girl's legs and foot.

Looking forward to your input.

Thanks,
Susie

[Porkette]

Hi Susie,
I've had seizures for 36 yrs. and take my word when I say that the seizure activity may not show up on an e.e.g. or other tests and that's because the brain damage is to deep in the brain to pick up the single. This happend to me when I went in for brain surgery all kinds of tests were done MRI CT scan, e.e.g. and much more but it wasn't until surgery that they found brain damage on both sides of my brain. Have your friend check out this web page for more info.

http://www.emedicine.com/neuro/index.shtml#seizures

This sounds like your friends daughter may be having reflex seizures. Here's wishing you and your friends well. May God Bless All of You!

Sue

[susiemagoo]

Thanks so much for the info., Sue. I will pass the article on reflex seizures on to this family. They need a dr. who thinks outside the box, which can be tricky to find, especially with neurology. I'll keep you updated.
Susie

[Porkette]

Hi Susie,
Tell your friend to take their daughter to an Epilepsy Center which are usually at a University Hospital. I've seen many different neuros. over the yrs. but I got the most help at an Epilepsy Center where there are Epileptologists (Dr. specializing in epilepsy) neurosurgeons and neuropsychologist. These 3 Drs. work together as a team to find the best treatment for Epilepsy and other neurological problems and they have their patient on the least amount of meds. Here's wishing you well and May God
Bless You!

Sue

P.S. If your friend lives in the U.S. tell them to call the Epilepsy Foundation at 1-800-332-1000 to get more info.

[lor]

Susie, You can indeed have a normal EEG. Unless you have a seizure durring the EEG it will be negative. I have had many, many negative EEG's.