I am so glad I found this site- now just hoping someone can help me! This is affecting my whole life.
My first symptom was at about 16 (I am 25 now), and was an intense, painful burning/stinging pain that lasted a few seconds but could be anywhere on my body. Arms, legs, face, head. At first maybe one or two a day, now several. Doctor said everyone gets pains sometimes.
About 5 years ago I had my first "episode"- The best I can describe it is: All of a sudden I feel dizzy/lightheaded. Surreal, like an out-of-body experience. Feel like I'm flying, sinking, ect. Extremely sleepy, can't hold my eyes open. Communication is hard for me, I feel like I'm fighting to stay consious. Feel cold. Thinking about anything AT ALL is difficult and my brain feels "clogged" or "foggy". I have no choice but to go to sleep, and usually I feel normal when I wake up. Sometimes the "episode" has lasted all day, which I will stay in bed and sleep until I feel better. Rarely, I will have a headache afterwards that doesn't last long.
This was infrequent at first, once every 6 months or so. When it started happening once, twice a month I said something to my doctor, who suggested I might be having complex partial seizures. He sent me to a neurologist, who looked at me, checked my reflexes, and said Your 25. Your fine! After that, I lost my insurance so I was not able to go somewhere else.
My PCP did a complete blood work-up, and found nothing. Even did the ANA test for lupus, and that was negative.
Now the symptoms have gotten worse, with a lot more:
MOST OF THESE ARE ALL THE TIME, NOT JUST DURING AN "EPISODE"
I have chills/goosebumps 85% of the day. I always feel cold.(I live in Florida) Sometimes the goosebumps are only on one side, like the chill doesn't go all the way through my body. The chills shake my whole body.
My arms, legs, hands, or fingers will be numb when I wake up.
During an episode my eyes "jump"- and I have a hard time focusing.
Now the bottom of my feet and sometimes the palm of my hand start burning, lasting about 15 minutes at a time.
I have a hard time thinking.
Can't remember simple things, like what I ate for dinner. I get confused about a lot, like how to spell words or what my phone number is.
That is a big deal to me- I graduated hs with honors and now I am in college- I am not stupid and hate feeling like I am.
I have started to have a hard time speaking- I think I say something-people say I said something different. Sometimes I will say things backwards. Like instead of PARKING THE CAR I will say THE CAR PARKING, ect.
I also feel like my skin is sensitive- light touches are sometimes painful, again, a burning sensation.
And the other day at school, I had an "episode", I felt like I was drunk or something. It lasted about 45 minutes, and then I seen a very quick white flash and heard a strange BZZZZZZTTTT sound (like electricity). All of a sudden, I was fine. That is the first time it has happened.
I know this is a long explanation, but thank you for reading and any help you may be able to give is very much appreciated. This is now affecting my everyday life. I have insurance again, but I am hesitant because the last neurologist made me feel crazy. By the way, I AM NOT DEPRESSED. The only thing that is depressing is that no one understands and I can't get help. It is hard for me to spend time with my children, do my school work. I feel like I'm in a dream all the time, and even my family is starting to treat me like I'm lying about it. I just want to feel normal again. No pain, no more episodes.
You have been through alot. Unfortunately, there are people that shouldn't be dealing with people; i.e. like the last physician you saw. Do not let that experience keep you from seeking the answers to get you back to wellness. Please see another Neurologist asap. I have been to 4 physicians myself; still no real answers, but I am seeing my 5th this month. I know someone will know what to do; put all the pieces together.
Yeah, I just love the anxiety/depression dx.; isn't it hilarious? I know it is given way too often. If a physician automatically jumps to that; RED FLAG; get rid of him/her quick.
Now, I am not saying you don't have depression, but it is not the underlying cause; it is secondary to something else going on with you.
I agree with opinmin - if your doctor is too quick with the "it's all in your head" syndrome then it's time to look elsewhere. I understand, all too well, what you have described and how people are reacting to you. Hang in there, there IS an explanation - somewhere. And maybe someday, hopefully soon, all of us who suffer these strange and painful symptoms will be informed and helped.
Have you checked internet symptons yourself? Looked up fibromalagia-it's cronic pain all over sometimes -it changes. Fibro.....is the weirdess disease. People wonder if they are crazy-and they are not. Good new about that-it's caused by cronic stress and the happy hormone cures it. Think happy thoughts and it gets better. In our religion we cure through good thoughts. But in medical they give you a medicine to help with the happy hormone working in your body again.
Checked all the brain fog symptons and diseases? I read that if you "seek the spiritual truth about yourself, the real truth, what do you need to learn to have a good healthy thought daily about yourself and others, that heals brain fog-or fuzzy thoughts-clears them up. I read it in a medical article. I believe that spiritually too. As I believe all health problems are caused by our thinking. You are a wonderful idea of God and loved by God with wonderful talents and gifts-that is the truth about you-claim it and you will get well!! Much love. Focus on God good and all will heal!!
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