Posted 6/4/2009 7:16 AM (GMT -7)
So, I've been on the hunt to find out what it is wrong with me! However, it isn't just me that has undiagnosed health problems. My 3 1/2 year old son does too. about a year ago, he started having myoclonic seizures and sensory issues. He is developmentally delayed and is seeing a developmental pediatrician and a neurologist for his epilepsy. I can't get answers from anyone why he has this. They call it idiopathic. I hate that word. He is too affectionate and social to be autistic and the specialists agree. For some time, I've wondered if discovering what is wrong with me will be the key to understanding what is wrong with him. I do remember him getting a tick on him a few years ago. It was a small tick. He got it while we were on my husband's parent's farm in Missouri. I remember being worried that we hadn't gotten the head because it was real red around it for awhile, but it went away. I have also been bit by ticks at this farm. I don't remember having a reaction to them, but it has been some time ago. Other than the seizures, sensory issues, development delays.. my son seems pretty normal for a 3 year old. He has angry outbursts and doesn't seem to understand as much as he expresses. He doesn't seem extraordinarily fatigued. Although he does sleep very well at night and if I can get him to lay down during the day, he will sleep for several hours. However, he likes to go go go like all other 3 year olds. He complains that his stomach hurts sometimes.
As for me, I battle mostly with fatigue. It's overwhelming at times. Last night, I went to bed at 6:30 pm and when I woke with my children at 7 am. I still felt groggy and unrested and found myself falling asleep on the couch. I have joint pain mostly in my knees, neck, wrists. I see alot of black spots in front of my eyes. It's like they are floating around all the time and when I try to focus on them, they swim away. Weird. I have ok weeks and really bad weeks. I have considered Lupus. I have tested positive for ANA so far. I am mostly concerned about the cognitive side of my issues though. I have a terrible short term memory now. I can never remember anything right after I do it. I can give my son his medicine and than not remember if I did. The other day, I poured him some cereal and don't even remember giving it to him but I had. All I remember was pouring the cereal and then I was looking around for it in the kitchen. I have no recollection of walking into the other room and giving it to him. It was surreal. I drop things a lot too. I've broken 4 glasses in the last month. It always seems like I have a good grip on the glass and then it's on the ground or in the sink or on the counters. I go to put things on the table or counter and I miss them. I also forget where I put things. If I were older than 29, I wouldn't worry so much about some of these things. A few weeks ago, I had my worst week ever. I had a tension headache for 5 days straight. It was terrible. I woke up feeling hungover every day and I felt like I was walking sideways and on air, kind of floating around and not really here. My head felt full in the back, like I had a lot of pressure in it. I ended up in the ER and had a cat scan and it was normal. It was so scary. My doc gave me muscle relaxers because she said that the muscles in my neck were very very tense. I was dizzy most of that week. I cannot tolerate alcohol anymore either and I have terrible hangovers. I also start feeling sick to my stomach and my head will pound when my husband plays his music in the car even a little loud. That used to not bother me at all. I have to wear sunglasses at all times when I'm outside because even when the sun is behind the clouds, I still get pounding headaches. I feel sick after I get out of the shower or a hot bath. I try to take cooler showers or cooler baths but I can't tolerate the cold. I have to take really hot ones, because I always feel so cold.
The thing is I know no one here can diagnosis me. I'm not asking for that. I'm just hoping that some that someone will be able to give me a clue or point me in the right direction. I know that something is wrong. I don't know if it is lyme disease, lupus, or whatever. I just know that it is something real. I am taking anti-depressants because my PCP swears I'm depressed. They are not helping with my physical symptoms, but they do make me happier for a little while.
Does anyone have children who have lyme disease? Did you give it to them in the womb? What were there symptoms? I have this feeling that my son and I are suffering from the same thing. I really believe that if the drs can diagnosis me, then it will help us diagnosis him. His seizures are bad, he was having 30+ of them before he got on meds and he is still having abnormal EEGs now that he is on meds. We are really worried about him. And, we are also concerned for our 1 year old as well. Especially, if this is something I have given them.
Thanks for reading!
(((Debbie Downer)))) *I'm thinking of changing my name to this because that is what my husband calls me*