Approximately 1 month ago, I began feeling dizzy and significant malaise, headache, flushing. This eased up and the tingling began first in my arm and then to each extremity. My arm was hit the worst. It felt heavy and dead. I experienced neck pain too. The fatigue continued. Brain and cervical spine MRI were clear for ms. 4 days ago the muscle aches were terrible, every muscle in my extremities. The fatigue and dizziness are much better but I continue to have tingling and uncomfortableness in my extremities. Is this cidp or guillain barre? I did have a preceding viral GI infection approximately 9 days prior to the dizziness. I am concerned this will be a life long struggle as my course did not progress rapidly and I was able to walk. What are your thoughts?
I had the same thing. It was CIDP. I had an IVIg but a month later i had a stroke. Going Thursday to my doctors
to see what else I can go on. But the predisone is working. I am walking better now than what I was. Still not good.
So keep the faith. It will eventually work out.
I was diagnosed with cidp at the end of April after months of slowly losing feeling in my extremities,and eventually not being able to walk. Mine took months to reach that point. You’ll need some tests, lumbar puncture to check for elevated proteins without higher white blood count, Emg to check for speed of nerve conduction also. That should let them know if you have cidp. Guillian progresses really quickly so it sounds like cidp. I have had ivig and am now on 60 mg of prednisone daily. Within a month I am almost back to normal. Hope this helps and good luck with everything!
Hi Heather. I think you will need to see a neurologist and have an EMG and perhaps a spinal tap to get a definitive diagnosis. Guillean Barre is an acute onset illness and would progress within days. The slower onset of your symptoms seem to be more like CIDP ,but it could also be a number of other neurological diseaes. Keep positive and remember...getting an early diagnosis is the most important step so you can get early treatment.Good Luck.
I’ve never heard of mild GBS. Anything I’ve read on GBS was very traumatic to the person affected. The main thing to watch for are any troubles swallowing or breathing. If that happens then go to the hospital. If I were you I would ask for those tests now. In order for most people to get better from GBS or cidp, they need ivig and/or corticosteroids. I think getting a definite diagnosis could put you in touch with the right treatments. One month ago I was in the hospital and needed help to get up. Today I can do everything except jog/run. The treatments have made a world of difference in my quality of life, that’s why I advocate you push for tests if still not feeling well. Hopes are high for you Heather!!!
Hopefully you just continue to get better every day /)
Glad to hear you are seeing someone sooner. Rapid diagnosis can make a difference in progression of disease. You need to find out for certain if it is either Gbs or CIDP. It could be something totally different. The main thing is you need to push for a definitve
diagnosis. Then get a second opinion to be sure.
I was told that if you continue to get worse after 6 weeks it is more likely to have CIDP. GBS supposely peeks at 4 to 6 weeks. But if you don't have any real medical care until 8 weeks into it who knows..... I was diagnosed with GBS by a neurologist with a 5 point EMG at 8 weeks after the first symptoms. I had 3 days of IVIG afterwards to get a little better. 4 months later I was diagnosed by a real neurologist at the mayo clinic with CIDP as I had thought myself, because the loss of more bodily functions. I guess it is so important to see someone that knows all about CIDP. There are too many dablers out there that think they know something.... Everyone I talked to or read about that had GBS was in ICU within 3 to 4 weeks. People that have CIDP seem to have a very gradual decline over a few months even years. I hear however some people will have CIDP after a GBS attack. I wish you get better soon and hopefully see a CIDP specialist!
Yes, I had a lot of muscle pain and twitching in the first 6 months until I was put on a regular schedule of IVIG. They tried to give me different nerve pain drugs, that made me just dizzy and gave me acess water in my feet. Ibuprofen was my choice of pain killer with no side effects! I wish someone would have just brought me to the ER at the Mayo Clinic early on. It would have opened the backdoor to get real medical care.
Due to many requests, we just launched a Guillain Barre community (also through bensfriends.org) that you all might want to check out --> http://www.guillainbarresupport.org/
Please share with your GBS friends and anyone else it might help. And if anyone wants to help out as one of the founding moderators let us know (you can email us on the GBS site) - less than 1 hour per week (welcoming people, helping with content, etc).
(This is a long due reply from early June)Hi again, it has been a very long hall for me. I am getting better, but it is slow. I guess last June I was not able to get out of a chair by my self. It took about 2 months on IVIG to make the difference. I was resting most of the day and laying down, once some one helped me up, I was walking slow and with shaky knees and a walker like 20 to 30 steps. Now I am trying to transition to quad canes. I am only taking a long nap the day after the weekly ivig infusion and i can finally get in and out of the bathtop myself. I wish I would have seen a real neurologist sooner, I am sure i would have had less damage and a much quicker discovery. I wish you well and hope you have good care! Nerves heal very slow, so the faster you get control over this the better your are getting back on track.