Hi Tarhealing,
I read your comments with great interest . What were your first symptoms of GB S and what was it that took you to the doctor to get a diagnosis ?
Tarhealing said:
I am 11 months into this. After 8 months and a pretty good recovery, I had a reflare after a sinus infection and am still trying to recover 3 months later. Both times, I had the 3 steps forward 1 step back. It’s always so hard because I love feeling normal without the constant reminder of how debilitated I can feel inside. I have aches and pains and sometimes I don’t. I had the burning pain at my worst point but that got better with time, stretching, and physical therapy. At night and sometimes during the day, I have fleeting pains that come and go. Some pain will stay at times. I think that I get tight at night because after I’m up moving around I get better. It’s so weird that way. But if I overdo it, I will be more tired during the day and the nerves inside my body will be so active at night. This never happened to me before June 2014. Sleep was peaceful. I can still sleep though because I have learned to roll with the wired nerve activity, bizarre twitching, and random pains. I am getting my strength back and I think recovering again but this crazy nerve feeling is almost everywhere now. I am taking a low dose of Gabapentin at night (200 mg) and that has actually helped me tremendously. I’m still trying to understand all of this.
Well my husband was not on Gout pills until now. After 3 bouts of Gout in 3 months the doctor finally has put him on Allopurinol. Before this he only got Gout maybe once a year so there was no need to be on daily pills. Since the GBS it increased, so now he is on the medication.
singletrucker71 said:
u shouldn't have gout if u take your pills all the time. I should know. by the way I don't take my gout pills all the time. and after my bout with GBS in last oct I haven't had gout fare up on me yet
Hi Xstitcher!
My first symptoms occurred about a week and a half after I had a Tetanus shot. I had pain in my little toe that moved up my leg with nerve firing, numbness, tingling and weakness. The weakness moved to both my legs and arms over a couple of days until I could barely walk though I still had my reflexes. Then the numbness/twitching moved up my spine to my face and I had difficulty turning my eye, chewing, and speaking. One of my doctors suspected "mild" GBS but the others didn't understand. Everything else was ruled out by spinal tap, multiple MRIs, MRAs, Labs, etc. I did have a great physical therapist and fought my way back over the months with those 3 steps forward and 1 or 2 steps back(sometimes more). I had lots of burning pain and stiffness during that time but I almost recovered (just a little nerve sensitivity in my calves and a little muscle twitching) when I got a sinus infection. This time my nerves have been hypersensitive and caused my heart to race and chest to hurt especially at night. I was weak again in my legs mostly but some in my hands and face along with lots of nerve firing/twitching. I haven't had gout but my finger joints hurt first thing in the morning. I'm on a search to get an official diagnosis because I thought I was going to be done with this by now. I realize the importance of someone putting it together for any problems that might occur down the road-if not it just sounds crazy to those who don't understand. I have needed to find doctors who understood for a long time but I thought it would disappear. Now, I'm determined to better my treatment and care for the future.
I now understand what everyone is talking about with pain in the legs.
I was in the neuro wing in the best hospital here in Denmark so was very quickly put through all the necessary examinations and was diagnosed with GBS 3 days after admittance and my treatment began immediately after diagnosis. Since my hospital is also a teaching hospital I was an object of interest there being only 50-75 such cases a year here.
Tarhealing said:
Hi Xstitcher!
My first symptoms occurred about a week and a half after I had a Tetanus shot. I had pain in my little toe that moved up my leg with nerve firing, numbness, tingling and weakness. The weakness moved to both my legs and arms over a couple of days until I could barely walk though I still had my reflexes. Then the numbness/twitching moved up my spine to my face and I had difficulty turning my eye, chewing, and speaking. One of my doctors suspected “mild” GBS but the others didn’t understand. Everything else was ruled out by spinal tap, multiple MRIs, MRAs, Labs, etc. I did have a great physical therapist and fought my way back over the months with those 3 steps forward and 1 or 2 steps back(sometimes more). I had lots of burning pain and stiffness during that time but I almost recovered (just a little nerve sensitivity in my calves and a little muscle twitching) when I got a sinus infection. This time my nerves have been hypersensitive and caused my heart to race and chest to hurt especially at night. I was weak again in my legs mostly but some in my hands and face along with lots of nerve firing/twitching. I haven’t had gout but my finger joints hurt first thing in the morning. I’m on a search to get an official diagnosis because I thought I was going to be done with this by now. I realize the importance of someone putting it together for any problems that might occur down the road-if not it just sounds crazy to those who don’t understand. I have needed to find doctors who understood for a long time but I thought it would disappear. Now, I’m determined to better my treatment and care for the future.
My motto is the 3 P’s
Patience Positivity and Persistence