New House, Seizure, CPR, Miracle

Letsgetcreative

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We bought a new house in January, got moved in and celebrated our daughters 2nd birthday in FebruaryA week later she developed a fever, and suddenly went into a seizure. I grabbed her to rush to the hospital. While I was holding her she stopped breathing and turned purple, I gave her cpr and her color came back and she started breathing again. Turns out she had a febrile seizure like I used to have.Then in March my Fiance' April began having headaches and vision problems. Then I began feeling a weird feeling in my chest. She went to an opthamologist (???) and was told it's either a Brain Tumor or Psuedo Tumor Cerebri.So we spent time at the hospital and did the MRI thing and found out she had PTC which is basically excess spinal fluid, so now she is dealing with that. Meanwhile, my chest pains/fluttery feeling got worse to the point I thought I was going to have a heart attack, then I was worried my pulse was slow, I got pale white and passed out. thats the first time I had a full on panic attack, I let it go again. Then on Fathers day I had a good cookout dinner, then I felt a flutter in my stomach. When it was still there the next day, I went to the hospital and they did blood tests, and found nothing. wound up going to the ER 9 times in 2 weeks, because I was sure there was something wrong, and symptoms kept feeling different. They searched for gall stones, kidney stones, ulcer, tumors, I had an ekg o n my heart. Everything was good, until they found a urinary tract infection. I cried myself to sleep a few nights in a row. I was miserable.A few days later I noticed a twitch in my calf. I was yawning a lot, and everytime I yawned my chin would almost lock up and shook when I tried to close it. !!!!!!!!!! I LOOKED ON THE INTERNET !!!!!!!!!!! Suprise, suprise... And poof I had a whole new list of things to worry about, mainly ALS. I had another panic attack and then I woke up the next day and my jaw was clicking.So I called a doctor and set up an appointment and I waited for Monday to arrive, on the way there. I realized my right thigh was jumpy. I couldn't relax it on the gas pedal. After 1 visit he dx'd me with Generalized anxiety Disorder, and Panic attacks.The yawn, the jaw spasm, and the lump in my throat was all part of the anxiety. And the jaw clicking was something called TMJ, which I already knew from my web searching. So I started Paxil, which takes about two weeks to kick in, but in less than two weeks I felt pretty good, so I stopped taking it. Had a mild attack a few days later when I felt twitching more.than out of nowhere I had a weird bag of worms rolling twitch in my calf, I panicked, got on the web till 4 in the morning and had a bad panic attack. I demanded a nuerologist referral, and had an emg last Tuesday. He did the norm, and told me while he was doing it that most likely it is something called Benign Fasciculations, the words I was waiting to hear. He finished the test and said nothing jumped out at him that says ALS, and he would definitely say it was benign. So now I am waiting for my PCP to get the definitive results.
 
And for the people who want to know.My twitches are nonstop 24/7Mainly in Calves, little ones, big ones, rollers. Hot Spots. Crawlers, Vibrating.FeetBicepsBackThighsHand once in a whileEyesFaceForearms
 
My goodness, it's a wonder you are still sane with all of that going on. I am sorry about both your fiance and your child, I hope they get well soon. Now on to a couple of questions I have for you. What is a PCP and what were the results of your EMG? Shauna
 
I have good news and bad news for you.....the good news is you have BFS. The bad news is you have BFS. No cure, no time frame, no rhyme or reason, but NO ALS.....LOL. You will live, and grow accustomed to this BS. Not to say you won't get scared out of your mind occassionally, it still happens to the best of us, but you will prevail. Let me know how your EMG turns out, but I'm pretty ready to lay my bet on CLEAN, CLEAN, CLEAN. Shauna
 
I will.Right now my right ring finger is going back and forth when I hold it out.I don't knowif it's just me, but one of my hot spots is just above my achilles tendon.
 
When mine started, it was in my right knee just above the knee cap. Seriously felt like it was plugged in to a light socket. My reflexes were through the roof, felt like I was going to fly off the handle if anyone touched my leg. It has quieted. Yours will too.
 
Thats what was going on with my thigh the reflexes were extreme, it went away and came back for a couple hours yesterday.but it's not there now. I appreciate your help.
 
You are very welcome. This is a nasty little illness, isn't it? I have discovered that I am indeed NOT a fan. Oh well, it did bring other things in my life into perspective when I thought I was dying with ALS. Suddenly the little things were the big things, and the big things didn't matter at all. Focus on the baby, the rest will work itself out. Yell if you need me....Shauna
 
Ok--Take a deep breath and CALM down--You are exactly like I was 11 years ago when all my symptoms started--The sooner you calm down and realize that you are NOT dying you can learn to live with the symptoms--Stop watching the twitching fingers and calves and etc.. Go for many long brisk walks--keep yourself busy -eat HEALTHY--drink calming tea......try to calm down--enjoy life with your daughter---if you don't pull yourself together you will suddenly realize that years have gone by where all you have thought about is yourself and twitching--------You will be fine!(also, if the Paxil you were given worked then TAKE IT)
 
Your story sounds all to familiar for this site. I personally believe one of the causes of BFS is exposure to extreme stress and anxiety, at some point your body just snaps. It may persent differently to each individual, but for people with BFS is presents with the symptoms you describe, good luck
 
I've never posted my story on this forum, but yours sounds like a carbon copy with only a little variation. I am much better after about 18 months and you will get better too. I agree that if the Paxil was helping by all means take it. I have GAD, also, but take prozac and buspar. I really resisted at first, but am glad my docs kept pushing me. I know it seems like you've wandered into some sort of world where you body has been taken over by an alien force, but it REALLY will get better - just be patient and push yourself to refocus your mind when it gets bad. Please PM me and I will be glad to share.BlessingsCindy
 

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