De ja vu ALL over again

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Irish Babe
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Date Joined May 2007
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   Posted 7/2/2009 9:43 AM (GMT -7)   
Last Friday morning I was on here responding to a thread, when I started to get a very familiar sensation. My face, neck, head and chest started to tingle. I got my DH up, said we need to go to the ER. On the ride, my body started to lock up. First my face and head, down to my neck and chest, on to my arms and hands. Last of all my knees. Everything was paralyzed. My fingers turned toward the opposite hand and the tips turned up. I was able to think and understand. My jaws were clenched, but I could speak - very slowly, but I knew what I was saying.
When we got to the ER, I was unable to release my seat belt or move out of the car. My DH had to get security to come and remove me. It took two men moving very carefully to get me into a wheelchair. At the desk, they asked if I had insurance and if someone had the card. They took my vitals, asking me to open a little wider for thermometer. I was open as far as possible. The woman concluded that since I had symptoms on both sides it wasn't a stroke, so I could sit over there and wait. 
Happily, I can say, I started to regain feeling and movement in my body. My left hand started to come back first, the fingers and soon after, the thumb. My right hand came back, the face and chest relaxed and last my legs came out of the contraction. I still hadn't been seen in the ER. I started to regain about 1 hr after I entered the hospital, didn't get into ER for 3 hrs. I remained in ER for 6 hrs, to then be admitted. I had my dr. running tests, plus she called in a neurologist and a cardiologist.
I had so many tests run and after days of being stuck in the hospital, I was finally released w/o any answers. All I know is it wasn't a stroke. I called drs office, she will be calling me back later today. I need answers, I don't want to live in fear of living.
I had a miserable headache for a solid week before I went to ER. So far, I haven't had a headache since I got back late on Tuesday.
I have no idea what happened, but I am so happy to be home again. I thought I would never see my children, my mother or my darling Evil Puppy again. My DH was w/ me and I know he was scared, too. I thank God for another day to spend w/ my family and friends - here and at home. It is hot and muggy today and yet it is so sweet to live it.
It is good to be back, dear friends!!! yeah
God bless.   Alice.

solar powered
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Date Joined Nov 2007
Total Posts : 538
   Posted 7/2/2009 10:07 AM (GMT -7)   
Alice, all I can think to say of your "adventure" is WOW. That must have been extremely scary. I am glad that you are doing better and I hope you get some answers as to what happened very soon. That not knowing would be difficult too. Be well. Lisa
Life is the ultimate contact sport. Train accordingly and play hard.

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Date Joined Jun 2009
Total Posts : 110
   Posted 7/2/2009 10:29 AM (GMT -7)   
OMG Alice! How scary. I am glad you are here today with us. It is ironic how it takes something like that to really appreciate our life. Enjoy life to its fullest.
anxiety, avascular necrosis, costochondritis, depression, cfs, hypothyroidism, fibro, gerd, thyroid, uc, crs(can't remember stuff)
in trying times, don't quit trying          

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   Posted 7/2/2009 10:40 AM (GMT -7)   

Alice, this is terrible!  I'm sure  you let them know you had a headache for a week before this episode occurred.  This is so strange and they really need to get to the bottom of this. 

Please let us know what you find out today.  I'm really concerned and am praying for you that this is not anything serious.


Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Veteran Member

Date Joined Nov 2008
Total Posts : 2859
   Posted 7/2/2009 10:44 AM (GMT -7)   

Oh, Alice.  I am so sorry and know how anxious you must be to get to the bottom of this.  I'll be thinking of you and hope it never ever happens again!



fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium

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Date Joined Jun 2006
Total Posts : 1156
   Posted 7/2/2009 5:50 PM (GMT -7)   
I am so glad that you are at home and healthy.


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   Posted 7/3/2009 1:39 AM (GMT -7)   
Did they do mri and other tests? Could it be Bells Palsy or a seizure? or do those act differently? I hope you get an answer. Glad you are better now.

Irish Babe
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Date Joined May 2007
Total Posts : 1380
   Posted 7/3/2009 8:53 AM (GMT -7)   

Thank you all so much for your concern, it means alot to me. I had called my dr yesterday and I never heard back from her and she is away today. I am not happy.

So far, I feel ok today, just tired, no headache.  I had an MRI on the brain, lung scan, EKG, US on Carotid Arteries, heart monitor and Holter monitor. I am still peeling sticky stuff off my body from all the monitors and IV's that were attached to me. My skin is very sensitive, so this has been fun.

My DH was also wondering about the possibility of it being a seizure, I don't know. I know nothing about Bell's Palsy, I will have to investigate that a bit, thank you for the suggestions.

My son and I did the groceries at the crack of dawn today, so when we were done I had to collapse on the couch. This was my first outing since the hospital. I survived, so hopefully, I can get out a bit over the weekend. At least maybe sit out in my yard and enjoy all my beautiful blooming flowers. The colors seem 'more so' to me right now. I will look up at the blooms and ignore the weeds. smilewinkgrin  

I thank you again for your prayers and good wishes. It warms my heart.

God bless.  Alice.

Veteran Member

Date Joined Nov 2008
Total Posts : 1097
   Posted 7/3/2009 11:52 AM (GMT -7)   
Hi Alice,

Wow-that sounds incredibly scary! I do hope your Dr. is able to figure out what's going on...I obviously am not a Dr. and so don't know much, but your symptoms sound a lot like what my mother in law went through when she came down with Guillain-Barré syndrome. Hers lasted like 6 months, though, so it's possible this isn't what's going on with you at all. It is definitely something I'd ask my Dr. about if I were you, though-just in case!

Hope you continue to feel better. {{{{warm hugs}}}}
love and hugs

fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 7/3/2009 12:56 PM (GMT -7)   
Oh Alice that had to be terrifying. Don't stop til you have answers to what may have happened even if you have to change docs. Yes that is enough to make you appreciate life more even with dealing with all the pain from fibro.
Have a good 4th and enjoy.
luv and hugs
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Date Joined Jul 2006
Total Posts : 384
   Posted 7/3/2009 1:06 PM (GMT -7)   
Alice, I am so glad that you are out of the hospital and that the feeling came back so you can move! That had to be so frightening to experience. When you had this, was it painful? or numb?

My muscles lock up and I can't move my neck at times and it is so painful, but I take a muscle relaxer to help ease the muscle tightness. (This happens when stressed, or overtired)

My muscles cramp all the time. I go through magnesium like crazy.

Please keep after your dr. to get to the bottom of this! If she won't, find someone that will.

Regular Member

Date Joined Jan 2009
Total Posts : 386
   Posted 7/3/2009 2:41 PM (GMT -7)   
OMG Alice! That sounded so scary. I hope your resting well right now, goin' grocries wears me out sometimes too.

Keep pestering your doc for answers.

Take care,
Lots of soft hugs,
Dx Fibro 1/2008, gastritis
300mg Gabapentin, 50mg Pristiq, Vitamin D3, Menopausal Support Multi-vitamin, Ultracet and/or Fentanyl patch as needed

Irish Babe
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Date Joined May 2007
Total Posts : 1380
   Posted 7/4/2009 7:49 AM (GMT -7)   

Thank you all for your concern. I was scared, no, I guess I was terrified. I have been tired these past few days, but so far, Thank God, I have felt alright.

Danielle, you mentioned GBS, as your MIL had had it, I also wondered about that.  I had a strange attack in '75 and later in '83, somewhat like what I had these past few wks. I mentioned it to my then dr after the '83 attack. He asked if I had been sick or had a fever lately, but didn't say why and I didn't think to ask him. I don't remember a fever, so we moved on. Yrs. later I was reading an article about Andy Griffith while he was on Matlock, he was talking about how he had been so sick w/ GBS and what symptoms he had, and how he had been sick just before it. The whole thing was stunning, now I was really wondering if that was what hit me.

The symptoms I've had these past few wks are even more intense than the ones from yrs ago. I've read the symptoms can last minutes, hrs, days, wks, months, yrs, I don't know whether they can build up or just 'toy' w/ you. I had tingling first, then clenching and pain in my chest that made it hard to breathe. My hands and fingers went into some weird contraction, the fingers turned to opposite hand and finger tips turned up I had no control. My jaw felt locked, but I could still speak, I just didn't sound like 'me'. My knees contracted tightly, forcing my feet to press into the floor. I was unable to move on my own, security had to lift me out of our car into a wheelchair. The chest was very tight and painful, the hands and knees were tight and painful, but it all started w/ tingling and numbness. That is about what I can remember of it.

I do plan on getting answers. I don't want to live my life afraid to do something, for fear of 'whatever'! I don't like living in Limbo. I also have appts this wk w/ audiologist for testing for ENT. I hope I can answers this wk from several drs.

I had been gone for several days in the hospital, I was afraid my puppy would get upset. My DD put the phone on speaker so I could talk to him, he kept licking the phone trying to get to me. As I walked in the house, he ran over to me and rolled on his back so I could scratch his belly, such a guy!!  Since I've been home he has been by me constantly. I think he is afraid I will leave him again.

Last night my DH and I went out for a little ride, the breeze was so delicious on my face. It is actually a beautiful day here on the East Coast, just enough breeze to see the flag flutter, beautiful sight! I wish you all a safe and healthy 4th.

Thank you again for your thoughts and well wishes.

God bless.  Alice.

Veteran Member

Date Joined Nov 2008
Total Posts : 1097
   Posted 7/4/2009 11:59 AM (GMT -7)   
Hi Alice,

Your symptoms do sound a lot like GBS, but I have never heard of GBS coming and going like that. Then again, my MIL is the only person I've ever know who has had it. She had a virus just like your Dr. asked about (I guess that tends to be a precursor?) and then one day she woke up and everything was tingling and numb and it just got worse and worse until she ended up in the hospital unable to move anything at all. She was like that for a couple of months, then slowly recovered over the course of 6 months. She still gets numbness and tingling from it, though. Again, I have never heard of anyone having bouts that come and go, but its definitely something to ask your Dr. about!'s so sweet that your puppy gave you such a warm homecoming. Aren't pets great??

Keep feeling better!!!! {{{{gentle hugs}}}}
love and hugs

fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck

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