Would love some input

I have read many posts and I sincerely feel for the many of you that have endured many difficult challenges and hardships. I pray for all of you that you would be healed completely. I can see a real community of encouragers on this site which is a beautiful thing. I am 49 years old and have always been extremely athletic. In May 2015, my neurologist said that I most likely had a very mild case of Guillain-Barre. My wife and I had eaten at a Sushi restaurant and both of us had stomach issues the next day. (Neither of us had actually eaten sushi.) The next day or two my toes and fingers went numb. My legs were extremely stiff and very sore. Walking was cumbersome. Both calves were extremely tight and my quadriceps(thighs) felt like I had done very heavy squats the previous day. My leg muscles were twitching like crazy especially while I tried to sleep. I am not sure but I may have had foot drop. Within a week's time I was already starting to feel a little better. My doctor ordered ANA tests which were positive. The doctor had a brain MRI done (to eliminate MS) and it showed normal as well as a lower back MRI to see if a collegiate football injury could be the culprit. This also was not the problem. Since I was already getting better the doctor thought that we should just wait and observe. Six weeks passed and I saw almost no additional relief. Although my calves were not as sore, my quadriceps were very sore all the time. The neurologist ordered an EMG/NCV test. These tests came out abnormal. The neurologist said that I showed some Lou Gehrig tendencies but he saw no real evidence of ALS. The problem does originate from the nerves and not the muscles. He said that I most likely have AMAN - Acute Motor Axonal Neuropathy. He saw evidence of slight denervation in the tests.

I had a period of 23 days in July where I could see improvement daily. My legs were feeling almost normal with almost no twitching and then WAMM, I had a set back. I had an episode that almost felt like a seizure as I was nodding off to sleep. It felt like electricity going down my brainstem and through my body. I woke up with very sore legs as well as slight bruising which I understand can happen when nerves die off. (I had showed bruises the day after my EMG testing on my legs also.) My legs and arms were affected with this episode. My forearms feel tight which makes my finger movement feel a little sluggish. I sometime feel a pricking sensation in my legs. Oddly, I have a slight click sometimes when I turn my head to the side. It has been about 12 days with my setback and I have seen very little improvement. I have seen no muscle wasting to the eye but I may have foot drop with my left foot. It is hard to tell as several toes on this foot are numb and cannot bend as much as the other foot. (Early on, I had considerable numbness in this foot which got much better during the 23 days.) Although walking is not comfortable, I walk on a treadmill daily about 2 miles at about 3 mph. I do feel like somehow walking helps as I get very stiff if I sit for too long.

Like many of us, I sometimes look at the worst case scenario. Spending time on an ALS website is enough to drive anyone mad. These unfortunate people desperately need our prayers. Just like searching any symptoms on the internet usually diagnose you with cancer I should probably stay off those sites. My hope is that it is not ALS.

I was wondering if this setback even sounds remotely familiar to anyone with Guillain-Barre or AMAN. Does anyone know if continued denervation ever occurs with GBS and what do normal set backs look like? Has anyway experienced foot drop? Do people see muscles get better only to see muscle get stiff and painful again?

I am scheduling another meeting with my neurologist but I thought that I would give you guys and girls a note to see if you can give me any insight or wisdom. I would appreciate anything that could be helpful.

From my personal experience living with GBS since May 2010, it does not sound like GBS to me, although I am not an expert. It does however sound like it like GBS involves the nervous system. GBS is your own body attacking and shutting down the nervous system causing systemic paralysis if I am not mistaken. This is exactly what happened to me. I enjoy reading stories of full recoveries about those able to walk again, I am very envious. I wish/pray someday I will be able to walk again but for now I live in a powered wheelchair because I do not have the stamina or endurance to push myself. I feel so weak most of the time and sleep maybe 12hrs a day because of it.

I was not diagnosed fast enough and that is why I have such an extreme case. I hope you find a Dr. perhaps a specialist in the nervous system that can diagnose your malady/condition.



Munchies Sockmonkey said:

From my personal experience living with GBS since May 2010, it does not sound like GBS to me, although I am not an expert. It does however sound like it like GBS involves the nervous system. GBS is your own body attacking and shutting down the nervous system causing systemic paralysis if I am not mistaken. This is exactly what happened to me. I enjoy reading stories of full recoveries about those able to walk again, I am very envious. I wish/pray someday I will be able to walk again but for now I live in a powered wheelchair because I do not have the stamina or endurance to push myself. I feel so weak most of the time and sleep maybe 12hrs a day because of it.

I was not diagnosed fast enough and that is why I have such an extreme case. I hope you find a Dr. perhaps a specialist in the nervous system that can diagnose your malady/condition.

When we’re you diagnosis with GBS. I was diagnosis October 2014. It only effected my lower extremity. I have gotten stronger but still can’ t walk yet. I was on multiple muscle relaxers for 9 months as soon as I seen the 3rd neurologist my body started. They relax my body to much. That was a shame. If you are on antidepressants get off. That will make you very tired and sluggish. I am very active and don’t take any medicine or pain pills even though I do have pain only every other day. I am in physical therapy for the 4th time and praying this is my last time. I plan to be walking real soon. God has granted me my wish. All my test came back negative. I really don 't think the doctors know what I have. I was diagnosis by 3 different doctors and had 3 different diagnosis. I was told I had GBS, Idiopathic Transverse Myeletis, and also Cipd. I have put my trust in GOD and know he is the only one that knows. I will pray that you get better each day. Don’t give up. Keep the FAITH!! GOD has a plan for you . How long did it take to diagnosis your case? My case does sound like GBS more than anything else.