Hi Everyone!! My story first time posting it!
AnonymousMay 16, 2007 at 3:23 pm
I’ve been reading a lot of posts it’s been great being able to read everyone’s information, very helpful.
I used to work in Childcare, we’re talking 70 plus a week! with children though I loved my job!
I was getting my life back just had got out of a bad marriage and got a divorce in August 2002, decided to move with my brother and mom to the south, Austell GA.
My onset was in March of 2003 as some of you know it was on my birthday! What a present! I was at work, first my head started hurting a lot like a really bad headache but much worse than a migraine, I started have trouble with my hands and heard my self talking funny. Then my hands,legs,face,arms all started feeling tingling and numbness. At the time I was working in the infant room.
I called my assistant boss in and told her I need to home something is wrong I don’t feel right she turned around and told me there’s no one to cover that I need to stay. I couldn’t afford to leave the job as I really needed it and it wasn’t easy to find jobs at that time either. So I stayed, huge mistake for me!!
I’ve worked in childcare for over 10 yrs and never got sick like this ever, not until I worked at this childcare center.
I don’t how but I managed to get into the shower, then completely exhausted I didn’t even eat dinner just went to bed.
I woke up horrifiedthings got worse one eye closed the other half opened, my hands and legs shaking. I was thinking what the heck is going on. Then our family dog heard me crying and got my brother to open my bed room door. My speech was slurred and I was having trouble with any type of noise or sound.
The very first time I went to the ER the doctor took one look at me for about 5 minutes did a CAT scan, told me I had migraines and sent me home with medication.
Three days later it was getting worse off I had numbness and tingling to top that off I was vomiting so bad it didn’t matter if it was a sip of water or something to eat nothing was staying down. Mom took me to the ER different hospital in a matter of minutes I was being looked at by 6 doctors, finally after going through that awful process my neurologist came into my hospital room sat down and told me I had Miller Fisher GBS.
I was so scared I didn’t understand what was happening to me and why it was happening I was only 33 yrs old! I started crying and couldn’t even wipe my own tears, it was awful.
Doctor explained to my family what’s going on.
Got to love mom she’s the best and has been with me every step of the way, she’s so amazing and does so much for me. My family immediate family has been great.
I was given IVIG.
On the 3 day at 2 am I was literally shaken up when the nurse came into my room and heard me weasing I was freaking out didn’t know what was going on, again it was just a precaution they said and a respiratory therapist stayed in my room over night to keep watch over me, telling me that if it gets worse I’m going to be put in the ICU I couldn’t get back to sleep.
The IVIG was starting to work a little so the doctor kept me on it an extra day.They were going to put me into the PT STAY UNIT which cost over 2,000 dollars a day we couldn’t afford it my family couldn’t believe what was happening.
So I was barely doing a shuffle but on the 8 th day with all that I could I was making sure I would go home, my family was working at a plan to help me at home since the hospital was no help.They released me that next morning.
I’m so thankful to my brother and sister who helped me with some physical therapy, it was exhausting,painful and very frustating. My family decided that we were going to move back to New Jersey to be near the rest of the family due to finacial problems which was pretty bad since I used all of my savings I went to live with my dad for a while until my mom could find us an apartment. I went to see new doctors that couldn’t believe how bad off I was.
I was put on new medication still walking with the walker, my eyes didn’t fully come back until late September 2003 I still have problems to this day with reading, noises from time to time bother me, I still get bad headaches, have numbness and tingling, bad burning pains and exhaustion.
July 3,2003 I went to Social Security to apply for benefits and so my fight started. I was denied, fought to appeal it.
In Dec 2004 I woke up one morning and had the scare of my life all my original onset symptoms were happening again! I was so scared my mom had already left for work so I called my dad he came racing over and took me to the ER I was crying saying no not again!!
When I was wheeled into the ER I told the nurse I’m recovering from Miller Fisher GBS and I beleive I’m having another onset, she looked at me and said what’s that? I started crying, petrified didn’t know what was going to happen now.
Again more tests, first the doctor tries doing a Lumbar puncture as I’m in the ER leaning over a cart that didn’t lock so my mom held my hands and the cart, first time he said he missed, second time he hit my bone I could have gone through the ceiling everything actually went blank for a moment that’s how awful it was finally he says I think we should do a scope Lumbar puncture. LOL! at this time I was like do you think? My goodness my mom kept telling me how brave I was I started crying again but she just kept reassuring me that I’m doing just fine.
They did the scope thing then tried telling me I had menigitis, lol!! Both my mom,dad and I were like NO!!
So they admitted me into the hospital which I stayed 3 days they said look this is in your head and we are sending someone to talk to you and have you evaluated, my dad flipped out my mom just walked out of the room.
Ater being evaluated for 5 minutes my dad told the doctor I don’t care what you say we know what’s going on this is a second onset maybe mild but it was a second bout of GBS and no one can tell him any thing else!
Hospital released me it was all very exhausting on to the clinic we went and I saw many doctors finally after months of seeing doctor after doctor I finally got a neurologist that actually sat down looked through my medical file turned to me and said no testing the world is going to show you what’s wrong that I have very bad residuals.
It’s all got to take time and it’s up to your body to heal it’s self now there isn’t anything anyone can do. The only thing I can do is stay positive keep doing what I can and take the medication as needed.
So three times the charm for Social Security the 4 th time I went with a lawyer and finally in October of 2005 I got the benefits! Believe me I was happy for that. Slowly I was getting into PT going 3 times a week, then finally was able to see a good foot doctor who took one look at my left leg and said why hasn’t anyone diagnosed you with drop foot,LOL!
I told him lack of medical coverage and not being able to see any good doctors he was really mad and gave me the number so I could be seen and get a foot brace to help me get around better than dragging my foot. This doctor was the best, quite funny too.
By Oct 2005 I was finally walking with a foot brace and a good cane, I thought wow! I’m finally moving now, I really can’t walk far without getting exhausted or my hands start getting numb and I get tingling.
Nov 2005 I was diagnosed with Raynauds temperature sensativity to cold plus I don’t have temperature control.
To this day I’m still disabled walking with a cane and my foot brace I get so frustrated at times that I break down and cry because I don’t like that I’ve gained weight which upsets me can’t move like I used to if I could it would be coming off, I’ve been learning my limits sometimes the hard way.
Lost a lot of friends they just stopped coming around that was really upsetting. It took me a long time to understand why.
I’ve been living with my mom she the best, she’s been my caregiver and amazing. We just found out in January that my mom now has Parkinson’s , she’s doing well and the doctors are quite amazed how well she’s doing considering she wasn’t diagnosed early on or on any medication. Which now she is and is still going strong, we help each other out as we can.
There isn’t a day that goes by that I don’t say thank you.
I’m also thankful for what I can do, I’m staying positive and strong with all my support. I’m so glad that I found this web site, I’ve talked to so many wonderful and helpful new friends here, I’ve been to my first Symposium it was in Atlanta,GA I had a great time and looking forward to making it to another one.
Thank you for taking time to read my story, I would appreciate any responses or any help.
Keeping it strong, never giving up! Valerie 🙂
AnonymousMay 18, 2007 at 7:01 am
[QUOTE]I started have trouble with my hands and heard my self talking funny[/QUOTE] I read your post and had one of those “aha, that sounds just like me” moments … so wasnt surprised to read further in your post you had MF.
The voice change was what really worried me and had me thinking stroke etc. I had trouble convincing the doctors in ER that my voice was not normal. They got a speech pathologist to take a look at me (just to humour me i think) and she identified that my palate wasnt moving and it was most likely neurological. that got the doctor on the phone to a neurologist in the next town and me an appt the next day. I went downhill quickly though – by the next morning couldnt walk and had to go to the neurologist by ambulance and within 48 hours was on a ventilator in ICU.
I spent 5 weeks at that hospital (4 in ICU) before being transferred back to my local hospital. Saw the same doctor again and i said “you didnt believe me did you” and he admitted he thought i was being hysterical. I think i would rather not have proved i was right!
I was lucky i got PT from the outset and had splints while i was laid up in ICU to prevent foot drop, so dont really have any ongoing concerns. Good luck with your recovery and it is so nice to read of you and your mom looking after each other.
AnonymousMay 19, 2007 at 11:48 am
Hi Varerie and thanks for telling your story. My onset was in September of 2002 but I can still remember the frustration. I think part of it was that GBS is rare and Miller Fisher unknown. I was able to get on disability the first try but your story is a familure one. I am glad you finally won.
Keep your head up and keep on smiling, Jim
AnonymousMay 21, 2007 at 12:39 pm
Thank you to everyone that replied to my story, I was glad to hear from you all and will contnue to keep strong. It’s nice to hear from others and know that their are so many people that have had some similar times.
It’s also nice to know there are people who know what you are going through and I want everyone to know if you every need a friend just someone to talk with you can always email me.
I’m keeping positive and hoping that we all will continue to stay strong even in our tough times, laughing, love and support truly helps us all. My heart goes out to you all and I wish you all the very best. Thank you Valerie 🙂
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