AnonymousJune 7, 2006 at 4:10 pm
Thank you everyone for your comments. I have the neuro follow up today and will be finding out about the MRI. I feel new strength after reading all your helpful suggestions. I am going to demand the EMG/NCG test today.
My symptoms starting with pins and needles in the legs. This was followed by stabbing/prickly sensations which come and go also in the arms and legs/feet. Extreme fatigue and then difficulty walking even though my legs looked perfectly normal. In the second week, the nerves on the left side of my face starting to twitch and numbess set in there with a pressure type feeling on that side. One morning I woke up to find my hands were numb. This is the third week after having rec’d the Tdap vaccine and I still have sporadic stabbing pains which are in my arms and legs, random spots. I have very little energy, compounded by the fact that I cannot sleep as the symptoms become much more aggressive at night. My reflexes are working, I still have “normal” strength in my muscles and everything looks peachy on the outside. I have been twice to the ER (hospital) and one visit to urgent care. After normal CT scan, blood and urine they sent me back home. I finally pushed to get a neurologist on my own, but was disappointed that he didn’t do an EMG test on my first visit. I know it’s only been 3 weeks, but it feels like eternity. The Neurologist said it can’t be GBS because I would not have any reflexes, which is why I asked the forum about reflexes. That is all for now and I will let you all know how it turns out.
AnonymousJune 7, 2006 at 7:05 pm
I told my Primary Care doctor about suspecting GBS and she ruled it out also because I had reflexes and I could do 2 squats in front of her. She sent me to a neurologist the next week would had about a dozen cases in his career and he diagnosised it right away. Confirmed with lumbar puncture and treatment that day. Recovery in hospital 2 weeks and back to work 5 months later. Full time right after 6 month checkup but still have residuals in feet and hands. Doctor says that may never go away. Fill out a VAERS report and think about VICP for medical expenses and lose of wages. But you must diagnose right away so you can start treatments and recovery. I found alot of good information that my neurologist did not tell me, to bad it was hacked into and off the internet for a few months. This best information I found was after you get out of the hospital, a B complex multivitimin a day works wonders for me in pain management for right now. Stay true and faithful in rehab. Best of luck and a speedy recovery
AnonymousJune 10, 2006 at 8:23 pm
I have found that finding relevant symptoms is almost impossible. Sometimes I think that I have to decide what disease I have, and then go to the docters that specialize in that and give me that one.:rolleyes:
Sorry, I have done this for a long long time–since 1985. I have had this and that med, this and that PT, pain trigger injections, psychiatric referrals, guilt trips for being so lazy and whining all the time, had my nerve fibers tested (that was a good shot, excuse the pun ) stress test (my heart, at least is not the guilty 0ne), numerous head CTs amd MRIs, my gall bladder removed when it was not the culprit . . .
My symptoms are so long lasting, so varied, so undiagnostic that symptoms don’t really help. I have too many old lady things. I am 73.and tired of all this. I neglected it a lot because I was getting tired of doing the 36 hour day: (living with a husband with Alzheimer’s.) He’s gone now so I can once again figure out my own symptoms. I would choose being 21 again but can’t seem to find a doc that can manage it.:D
AnonymousDecember 11, 2006 at 7:11 pm
I was sorry to read that your husband had Alzeimer’s. I don’t have experience with that, and I thank God. I work with the Carer’s Association and have learned a little. I won’t say I know how you feel – because I don’t.
I noticed that you have had “psychiatric referrals” and that ticks me off to be honest, because I’ve been in the ‘it’s all in your mind’ place when in fact it was all in the rest of the body, and I’ve known precisely the same thing happen to others. Years before GBS hit, I worked with a young woman who had awoken one day unable to move. The doctor told her is was stress. What was causing her stress? Well, basically – being unable to move!
You also mentioned “guilt trips for being so lazy and whining all the time”. I suspect that a lot of us have been down that path and even though we may know better, it can still haunt us. I well remember lying in the hospital bed, a woman coming in brandishing a walking stick and telling me that I ‘ought to get up and go home to mind my chld’. Now that really hit home as I got GBS 6 weeks after having my daughter. Although I knew that I could not move in the bed, the guilt I felt was amazing – I really thought that it was my fault. It turned out that this woman had said the same thing to others – she was short on oxygen and delusional – but that didn’t stop me wondering if she was right.
Apart from that, if you find a doc that can manage that ‘being 21 again’ please, send me her or his name and ‘phone number.
May 15, 2017 at 2:53 pm
I know it has been 10 years and not sure if you still get replies to this group. I am having a very similar experience. I had the Tdap vaccine 3 months ago and been having the exact symptoms as you. I feel it is GBS but the doctors I saw said because I still had reflexes it was not GBS. Did you get better?
May 15, 2017 at 3:50 pm
I doubt if any of the original participants in this old thread will be responding.
Info about Tdap side affects can be found here:
Here is an excerpt from the CDC write-up:
Some people should not get this vaccine. Talk to your doctor if you:
have seizures or another nervous system problem,
had severe pain or swelling after any vaccine containing diphtheria, tetanus or pertussis,
ever had a condition called Guillain Barré Syndrome (GBS),
aren’t feeling well on the day the shot is scheduled.
May 15, 2017 at 4:08 pm
I didn’t think they would. It was work then a shot. Thank you for the information and help Jim.
You must be logged in to reply to this topic.