Neuropathy/GuillianeBarre - Neuropathy Message Board

SSH9247 · 09-26-2006, 01:51 PM

1995 - stood up and feet were numb. Over two weeks this Neuropathe rose up all the way to the lower face. I experienced interior tightness ( like I was nine months pregnant and having one on-going contraction. Could feel the neuropathy vaginally also. Was give steroids - no help - and no diagnosis.

2000 - the neurapathy never went completely away since 1995 but the facial and most of the interior was constant but bearable. After another occurrence of the intense interior tightness I was diagnosed with chronic Guilliane Barre. Neurontin did not really relieve the symptoms but again they subsided to bearable.

2004 - another severe "interior" occurrence after major surgery. Zonegram completely drugged me.

Yesterday - another severe "interior" occurrence as well as facial for no apparent reason. Had to take pain medication. Much of the pain is subsiding. made an appt with the doctor who diagnosed chronic GuillianeBarre - does anyone have any other ideas. No diabetes involved. Other tests show nothing. ANY HELP IS APPRECIATED.

Lena-marie · 09-26-2006, 04:23 PM

Hi there, I know how frustrating this can be! I also am going through it all over again, and it sucks. what are your symptoms exactly? I have Bad burning sensation in my fronts of my thighs and bottom of feet which feels like a raw sunburn and also a numblike feeling. very hard to explain but whatever it is its sure NOT normal... I sa wmy neuro today, and he said 65% of the time there is No Dx. hmmm how nice..I am getting more blood work donw this week for b6 b12, cbc, thyroid..and others..which I had all done when this first started and all normal. so....dunno what to do now except pray it goes away like it did b4..
Goodluck...
Lena

SSH9247 · 09-26-2006, 04:45 PM

As I said woke up one day and stood up and feet were numb - this traveled up as tingling as far as my lower face. Although much has subsided at times my feet always feel numb abd walking in closed shoes can be painful. The internal tightness is what flares up a couple of times a year. I am just not sure the chronic GuillianeBarre diagnosis is accurate. Thanks for your concern - hope things get better for you -

6foot3 · 09-26-2006, 05:11 PM

SSH...Guillain-Barre almost always happens after an vaccination i.e. Tetnus,Flu,viral infections etc.. The immune system is on hyper-attack after the vacination or infection for unknown reasons and attacking the myelin coating of the nerves. It usually requires a hospital stay of up to a week or so and then normally resides.Chonic Guillain- Barre is usually refered to as CIDP or Chronic Inflammatory Demyelinating PolyNeuropathy....

SSH9247 · 09-26-2006, 08:31 PM

Thank you so much - I will ask the doctor on Thursday - what is the treatment ?