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Old 09-26-2006, 12:51 PM   #1
Join Date: Sep 2006
Location: New Orleans, LA
Posts: 3
SSH9247 HB User

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.

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Old 09-26-2006, 03:23 PM   #2
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Join Date: Apr 2005
Posts: 180
Lena-marie HB User
Re: Neuropathy/GuillianeBarre

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..

Old 09-26-2006, 03:45 PM   #3
Join Date: Sep 2006
Location: New Orleans, LA
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SSH9247 HB User
Thumbs up Re: Neuropathy/GuillianeBarre

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 -

Old 09-26-2006, 04:11 PM   #4
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Join Date: Sep 2005
Location: USA
Posts: 1,562
6foot3 HB User
Re: Neuropathy/GuillianeBarre

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....
To surpass the 120 yr Life Span !!!!

Old 09-26-2006, 07:31 PM   #5
Join Date: Sep 2006
Location: New Orleans, LA
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SSH9247 HB User
Re: Neuropathy/GuillianeBarre

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

Old 09-27-2006, 09:48 AM   #6
Join Date: Aug 2006
Location: dc suburbs
Posts: 76
dahlek HB User
Re: Neuropathy/GuillianeBarre

CIDP has been in the past considered an extension, a chronic form of Guillame Barre...It is no longer considered so. Many [at least 6-10] chronic neuropathies, either genetic, autoimmune or related to other chronic diseases are also in the CIDP category. The basic tests start with blood, urine, MRI's to rules out toxic poisoning issues [these can range from mold to food poisoning], spinal damage, bacterial or viral issues, then progress to the nerve testings to diagnose actual nerve damage...then which type. Autoimmune diagnosis entails even more blood and a spinal tap-the fluid of which is analysed for certain protien abnormalities which indicate auto-immune from many sources. There are over 200 neuropathies, many are autoimmune, but, many not.
The standard treatments address the symptoms, mainly pain and balance/muscle issues. Normally strong steroids are a first step, [I could not go this route], then other antibiotics, followed by IVIG - infusion of a processed blood product or plasmapherisis [a filter process of your own blood -kind of like dialysis sorting out kidney problems]. The latter two are very expensive and have to be tested thoroughly prior to any insurance coverage approval. In addition to either the sterioids, anti-seizure and/or many pain meds are used alone or in combo to ease the pain/discomfort.
If you web up the many words I've put out here, I am sure you will find a wealth of information to help you get to a point of relief! Let us know...

Last edited by dahlek; 09-27-2006 at 09:51 AM.

Old 11-04-2006, 08:30 PM   #7
Join Date: Nov 2006
Location: NC
Posts: 19
joastudio HB User
Re: Neuropathy/GuillianeBarre

My 28 yr old daughter developed a flapping foot and hip pain days after getting a flu shot. Prednisone helped the pain go away in her hip, but the foot became DROP FOOT. Over this past year, she has only gotten worse, after every kind of tests, 1 orthopedic specialist, 4 neurologists, 1 neurosurgeon, all of which have not abeen able to diagnose, or HELP her in any way. She falls,and it has only gotten worse. She is pregnant now, 5 months and only getting more awkward. She was recommended to wear a brace, which helped at first, but it made her leg weaker and now she falls with it. She now uses an arm crutch, after a bad fall twisted her leg.

We now are suspect that the flu shot had alot to do with this. She things she has Gullian Barre, but from what I have read, it is a much more severe and fast paralyzing desease. Your symptoms don't sound the same, but I konw everyone is different. I ahve also heard of something called Vasculitis, that is very similar. You might check into that. Blessings on you.

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