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-   -   Best way to find a solution? My story.. (https://www.neurotalk.org/peripheral-neuropathy/217763-solution-story.html)

Coriny 03-22-2015 07:27 PM

Quote:

Originally Posted by UTGrad (Post 1130988)
Sounds like me. I'll be 35 in June and this neuropathy started out of the blue. Welcome bud.

I, too, started having problems after dental work!! I sure hope I can find a neurologist to listen!!

Tunaboy 03-22-2015 08:19 PM

Quote:

Originally Posted by Coriny (Post 1131086)
I, too, started having problems after dental work!! I sure hope I can find a neurologist to listen!!

Yeah same here. My neuro says my surgery could have triggered the condition. Also a bad reaction to Amoxicillin could be the cause as well. I'm going for more testing on tuesday and possibly seeing another neuro as well. Will keep you posted.

tkerlinger 03-22-2015 08:46 PM

:D.........it could also be caused by an immunoreaction to the seasonal flu shot(Guillain Barre - CIDP).......did you get one last year? The timing coincides with when most people get the shot.

Tom K

Tunaboy 03-22-2015 09:48 PM

Quote:

Originally Posted by tkerlinger (Post 1131108)
:D.........it could also be caused by an immunoreaction to the seasonal flu shot(Guillain Barre - CIDP).......did you get one last year? The timing coincides with when most people get the shot.

Tom K

No I always stayed away from vaccinations.

tkerlinger 03-22-2015 10:32 PM

OK....good.....but your symptoms still sound like GB/CIDP could be a possibility, and I'm not kidding about early diagnosis being very very important. Be sure your Neuro Dr. is looking strongly at the possibility.

I am traveling early tomorrow to take care of my disabled 35 yr old daughter (CIDP), so I do not have the time tonight......but soon I will come back to share her story and the very real link between the flu shot and GB/CIDP.

Tom K

Coriny 03-23-2015 12:22 AM

Quote:

Originally Posted by Tunaboy (Post 1131124)
No I always stayed away from vaccinations.

I received the vaccination for years. Have not had it for the past 2.

Neuroproblem 03-23-2015 03:09 AM

Quote:

Originally Posted by Tunaboy (Post 1131124)
No I always stayed away from vaccinations.

please dont stay away from vaccination, because you believe they cause more harm then good. vaccines for flu, MEASLES, tdap vaccine helps prevent the spread of those diseases. As for your nerve injury, did they ever tell you why it happened?

madisongrrl 03-23-2015 11:34 AM

Quote:

Originally Posted by Neuroproblem (Post 1131170)
please dont stay away from vaccination, because you believe they cause more harm then good. vaccines for flu, MEASLES, tdap vaccine helps prevent the spread of those diseases. As for your nerve injury, did they ever tell you why it happened?

I wouldn't put the flu shot in the same category as Measles. The literature on the flu data is not as sound as people think, especially for healthy populations. One place to look at a review of this data would be The Cochrane Review.

I have friend with GBS and his doc told him under no circumstances can he get a flu shot because it can trigger the disease again.

zkrp01 03-23-2015 12:34 PM

60 days after trauma
 
Quote:

Originally Posted by Tunaboy (Post 1131035)
I don't think I was given NO, but I can find out. I have a feeling it was the Amoxicillin or combination of that and anesthesia that set it off. I don't recall having bowel issues afterwards. So just start eating Kefir products? I was taking the pearl probiotic months ago. Maybe I should start those up again.

one night in bed my left side became involved and soon matched my right. I could feel the transfer of involvement and it didn't take over 20 minutes. I hpoefully thought that these feelings were a good thing at the time. If you have lurked here and read stories you know that appointments are slow and the need for answers is paramount. So while you are waiting for answers that may or may not come, Excersise to tolerance, get your sleep, and see if the foods you eat may worsen inflammation. My situation had an acute phase that involved muscle wasting and loss of balance. I do not write this to alarm you as all stories are different. My legs got weaker and after smacking the pavement about two or three times, I got me a walker. 2 yrs later I am practicing in the house walking freely. I feel that returning strength is dependent upon nerve healing rather than physical training as I have pushed it and and found that this problem has its own timetable,sllloooww. So study for Mitochondrial health and keep learning. I use a gyro bike daily to keep my knees unlocked, it really helps. I listen to classic rock and a minimum of three songs plus commercials. The only other thing that has helped (besides pain meds) is Mortons Epsom Salt Lotion for burning tender tops of feet. Good Luck, Ken in Texas.

Tunaboy 03-23-2015 09:24 PM

Quote:

Originally Posted by Neuroproblem (Post 1131170)
please dont stay away from vaccination, because you believe they cause more harm then good. vaccines for flu, MEASLES, tdap vaccine helps prevent the spread of those diseases. As for your nerve injury, did they ever tell you why it happened?

I was just told I probably damaged my pereneal nerve, maybe slept on it wrong.

Quote:

Originally Posted by zkrp01 (Post 1131278)
one night in bed my left side became involved and soon matched my right. I could feel the transfer of involvement and it didn't take over 20 minutes. I hpoefully thought that these feelings were a good thing at the time. If you have lurked here and read stories you know that appointments are slow and the need for answers is paramount. So while you are waiting for answers that may or may not come, Excersise to tolerance, get your sleep, and see if the foods you eat may worsen inflammation. My situation had an acute phase that involved muscle wasting and loss of balance. I do not write this to alarm you as all stories are different. My legs got weaker and after smacking the pavement about two or three times, I got me a walker. 2 yrs later I am practicing in the house walking freely. I feel that returning strength is dependent upon nerve healing rather than physical training as I have pushed it and and found that this problem has its own timetable,sllloooww. So study for Mitochondrial health and keep learning. I use a gyro bike daily to keep my knees unlocked, it really helps. I listen to classic rock and a minimum of three songs plus commercials. The only other thing that has helped (besides pain meds) is Mortons Epsom Salt Lotion for burning tender tops of feet. Good Luck, Ken in Texas.

Yes I try to exercise as much as possible. I was actually very active in the gym, mostly weight training. But I haven't gone since last week because I felt like lifting weights just aggravated my symptoms. Now there's no way I can do squats when I am having to expend so much energy just to walk.


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