I have a 22 year old daughter has had juvenile rheumatoid arthritis since she was 13 years old. She was once in a wheelchair for 3 years and since then she was in and out of it for about a year or so. Right now she is not in one which is great but her RA is not doing so well and she has an appointment with her Rheumatologist in a couple of weeks or so to discuss it with him.
Anyhow, in the past few months my daughter has been having some strange symptoms when she wakens from sleep in the morning. She more or less says her head feels pressure but it is NOT a headache or a migraine and is it NOT her sinuses. She says that she can not communicate and if she has to it is extremely difficult to get the words out. Her eyes will flutterly a lot and her mouth makes weird movements and her arms will shake. She has to sit down or lay down. This will last for 2-4 hours. She says it feels as if someone is shaking her brain around and it is very painful but she is very clear that is it NOT a headache of any sort. This all started about 9 months ago.
Over time it has gotten worse. Because of insurance and it is hard to get into her regular physician and transportation problems it has been hard to get this figured out and very frustrating. Mostly it has been the doctor's fault in taking this long. I am at my wits end and will be letting the doctor know when we see her in about 2 weeks as she also has an appointment with her. This is serious stuff as it is getting worse.
After the 2-4 hour period is over my daughter does not know anything that has been said to her during that time period and for about 1-2 hours after that when she is up and about she will repeat stuff and not know that she has done so and gets frustrated; so in effect she is having short term memory loss at that time.
Now what is happening every day during the day is she having these same exact symptoms that she has in the mornings but for a shorter period of time. It can happen any time of the day just out of the blue. She can be standing just talking and all of a sudden boom she starts to have like a seizure (like is now what I have come to think of them as). But during the day they only last about 10 minutes. Afterwards she is wiped out and doesn't feel so well for about 30-60 minutes. It is not safe for her to be alone now as you never know and I am concerned.
She had a MRI on her brain and it came back normal; she just had a sleep study and it came back normal just this week. The one thing my daughter and I were talking about was could this be related to Humira since she takes Humira. She takes nothing else. She takes Humira once every two weeks.
I personally think that she should have more tests done.
Oh also there are times when her head actually swells for a few hours and you can actually feel it. It is really weird. She is on medicaid and you just can't go to the emergency room unless you are practically dying and we don't have a vehicle; it's a rough situation.