Way i feel now, maybe i am not crazy

this will be my first time telling my story. it has been two years exactly . I was for sure i was going to die. no one could diagnose me. had surgery for carpal tunnel syndrome and ulnar nerve release and dequire vain release in Feb, 2013 right hand and in march on left hand. April 25th went back to work, only to work five days. Friday noticed lite numbness and tingling feeling in hands and feet. We were camping and fishing having fun. as weekend goes on notice increased tingles and numbing then fatigue, thinking what on earth is going on, this just isnt right. When we headed home I decided i would go to our local urgent care. was seen their and that doctor sent me to hospital e.r. waiting time 6 hours. i was not showing sings of stroke as urgent care doctor thought. seen there sent home after 8 and a half hours. here are some blood presure meds. and valum. if not better in 2 weeks follow up with family doctor. next day knew things werent right so went to different e.r. they took blood, then did a full tick bit work up. this doctor put me on doxcycline plus stay on meds already on in a few days you will be better. 4 days goes by still not better pain is bad, tingling in hands and feet worse then to add to all this i start to lose my blatter. now i know things is not right my family knows as well. now we are on like day 8 {thanks for family} cause i can not do for self. i am have sever pain in right side coming around into my chest. i need help bad my husband call an ambulance after i fall. i get to local hospital no heart attack [i already told them i didnt beleive it was my heart,] all hospital in our area have access to the others info well i am dehydrated so get i.v. for fluids and bag of doxcycline. Tick bit came back positive for ehrlichiosis, ok go home, thing is going to finally help. a great big No, still did not get better. i am now very weak no feelin in right side of face and this is bad , had to keep a port a pot by my chair. we decided to go again to hospital cause i could not get into my doctor for three days, he was full up. got to hospital hooked me up to i.v. give me fluids was dehydrated again muscle relaxer along with nerve pills go home you get better soon, give the antibioic time to work. as if 13 days was not long enough. two day later laying in bed cause thats all i could do by now my mouth was drawing and eyes would not close. my husband call my dr. witch was still not in, now on vacation, [my crappy luck]. he decided to call his dr, i had an appointment at 2 p,m. by this time i had gave up. i frimly believe no one was going to help me i knew i was dying. my husband literlly caried me into that appointment. within three hours i had been admitted to hospital and blood had been drown again, m.r.i., and lumbar puncture plus more test that i dont remember them doing, but was told by family members. the next morning i was told i had g.b.s mild to moderant. never completly paralized only partly. six day in hospital and two round of fill better meds. and i came home to recuperate. i am scared of this coming back. i am still having the muscle spasms, numbing and burning of feet and sometimes hands and my bladder is still very week. i get tired very quickly and have the heavy sluggish legs and arms. i hate this being ill, i pray i will one day be the way i once was. i have lost my job of nine years. this upsets me , and yes i need to stay calm..no stress. not tell i join this group did know of or hard of residuals nice to know i am not crazy. my neurologist never told me any of this i have learned on here. I was suppose to get well have no problems. I have been tested for m.s. and all sorts of things. guess my nero. didnt know that much about g.b.s. ha ha me neither learning as i go. i exercise daily, try to stay active as possible, and always stay positive.

Hi Kel! I am so sorry for your tough time. I can relate to your story in many ways. I am so thankful for this site. It has helped guide me in the right direction to hopefully get the help that I have been missing while giving me the support to keep up the search and helped me to understand more about what was and is happening to myself when others have not known or in some cases cared to find out. I appreciate you sharing your story and helping others like me know they are not alone in their fight to recover while striving to stay positive. Hope you continue to get better!

Kel,Thank you for sharing your story.
Hang in there and stay positive.
I’m also realizing GBS is a continuous journey. Especially with the doctor’s who lack knowledge. Perseverance is essential.
Hope you feel better soon!

Hello Kel, I certainly can relate to your story. Many of us were misdiagnosed initially, but thankfully they finally got mine right. While my recovery has not been as quick as I’d like (patience isn’t my strong suit), I get better daily. Stay strong and keep that positive attitude!

Hello Kel. Your situation definitly sounds horrible and very scary! My husband was sick for 3 weeks before he was diagnosed also. He received a tetnas immunization on January 6th and within a few days had muscle pain that progressed to numbness in his hands and feet that eventually was up to his abdomen. He had been started on a new Cholesterol med called Lipitor that they were trying to say was causing the muscle pain as this is a side effect of it. When he could not urintate I took him to Urgent care. They could not figure out what was wrong and sent us home. 4 days later he could no longer walk so I took him to the ER and finally they did all the tests and diagnosed him with GBS. By the next day he could no longer swallow. Luckily it never got to his lungs. We are 4 months into this and I understand now how frustrating it is to have such slow progress...from a wife's prespective anyhow. I can't really know how it feels to have the disease. Hang in there! I think this forum for discussion is very helpful to know you are not alone!

The lack of knowledge and misdiagnosis are horrible. At least now knowing what it is you will feel better. You will get better, be patient. It takes a long time. Small steps at a time, don’t over do it. Don’t stress out. You’re not alone!

Hi kel just be strong : this problem will take it’s time but a positive mind will help faster :don’t miss on your physio therapy :keep yourself busy and happy : god bless you to a speedy recovery :

Thanks for sharing your story. Makes me feel not so alone! I was diagnosed on January 9, 2015. My boss thinks I should have been back to work 6 weeks ago if not earlier. I think he believes I’m not as sick as I claim I am. NO ONE knows how sick we are unless they actually see us. I still have terrible pain in my feet and can’t drive yet. Everybody says to try to stay positive but that is much easier said than done! Good luck with your recovery!

I think unless you have studied this or experienced it you do fully understand how bad this is. It's a problem that just isn't seen so it makes it that much more difficult for others to understand.

I pray for better awareness of this terrible disorder.I agree, people don’t understand the residuals left with us. It is very sad and often lonely. I’m so grateful for this site, it has really helped me on my journey!

Hi Kel, thanks for sharing. Your story is similar to mine, I didn't have quite the same experience, as far as how long it took, to get diagnosed..my symptoms were numb and tingling first in my toes, then my fingers, then I had a regular follow-up,at my Dr, for my medications, and was asked if I had had a flu shot, yet. I replied no, I got one. After that, is when I noticed dizziness, and loss of balance, (which I chalked up to a new medication of Prozac)So I then went to my local ER after feeling extremely weak in my legs, and couldn't really walk, without falling. They just did the usual tests, to make sure it wasn't a stroke, or a heart attack. Then they released me, and told me it was my fibromyalgia. I knew they were just using that as my problem, because they couldn't figure it out. then 3 days later, went to a different, bigger hospital close to me, was admitted,and diagnosed, (I was lucky to have a good Neurologist) then had the IVIG treatments, for 5 days, then eventually rehab. But my story is similar, because it affected my right side, too, the worst, for the paralysis, mine was in my face, too, so got a feeding tube, I had some speech therapy because of my speech, my right side of my face is fine, now, but my left still isn't back to normal. I was diagnosed in Nov, last year. All of the doctors suspected that it was the flu shot that contributed to getting GBS. Did you have any type of vaccination before the GBS?

no got my flu shot in oct. 6 months before the G.B.S. had the tick bite infection and the hand surgerys. my immune system was way down, so thats what we guess caused this crazy thing

I'm so sorry to hear of your struggle. It's very scary how little the ERs recognize this - I wa sin ER 3 times over 3 weeks and it only finally got diagnosed in a doctor's office visit when I went to a new neurologist. Yours sounds like it was very close to being life threatening. I'm glad you got the care you needed and I do believe we will all recover from this! Most people really do fully recover, it just takes a long time. I just discovered this group too and it has been so helpful for me, to hear other peoples' stories, and to be able to ask questions. WIshing you a speedy recovery!

Your story sounds so simular to mine. I am 10 months out from GBS but still having issues after a recent episode of numbness and tingling in hands and feet. My neurologist was out of town and I was seen by another Doctor. He suggested this was “all in my head” as the tests he did were all normal. It is frustrating that so many professionals have never seen or worked with GBS patients. I am trying to stay positive but it does get frustrating! Hang in there and God Bless!

There will be days when you will feel that you'll never get better. This is normal. I have to keep reminding myself on those bad days that I have progressed a lot in the past 12 months. The slow rate of recovery from GBS is very frustrating so it's important to keep yourself busy with exercise and hobbies. Every week that passes is one week closer to recovery.