Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 Doris, I remember that you said your husband had suffered from Guillain-Barre Syndrome. A dear, dear friend of my family's has been diagnosed with it and she is slipping away very quickly. I hate to take up your time, but wanted to ask you if you have any advice, recommendations of great doctors, new drugs in the pipeline, clinical studies or anything else you might think of that we could pass along to her. I'd be glad to take your response privately. Caroline Glover Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 Thanks so much for your reply... I will pass everything on to her. I don't know if she has seen an infectious disease specialist or not... but it sounds like an excellent suggestion. Caroline > From: TJ <adapt4kids@...> > Reply-< > > Date: Wed, 19 Apr 2006 07:18:43 -0700 > < > > Subject: RE: Guillain-Barre Syndrome > > Has this person seen an infectious disease expert? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 > 1. Have the family check in with the GBS foundation in Wynnewood, PA. I don't have a newsletter handy but a google search should easily spit the phone number out. They will put them in contact with local families who can visit and point them in directions. 2. There are a variety of forms of GBS. Sometimes the person is tying their shoes when they suddenly pitch over. Normally, it takes 7-14 for symptoms to appear. Starts at the fingers and toes and moves inward. At last check the most definative test for GBS was a spinal tap. If the symptoms are caught within the first 14 days, Plasmapheresis is the best treatment. After 14 days, Drs may consider using IVIG to calm the immune system down. In GBS, the immune system recognizes the myelin as a foreign body. Research has shown that the myelin consists of protein etal that are very similar to viruses, esp EB and CMV known triggers of GBS. The immune system then attacks the myelin. Plasma exchange (they suck the blood out, spin it around and put in new plasma) normally does this but there are risks because of the method (HUGE cathater is used). IVIG is made of donors - the risks are evident if the product is not screened. A bacteria called (Camphylbacter jeujuni) is also at fault. This is often found in under cooked chicken. IVIG is often the course of treatment. GBS caused by this bacteria is usually pretty harsh. 3. Stress, viral illnesses, bacteria can all trigger GBS. There also is usually a family history of autoimmune disorders to include diabetes. GBS was called polio in the 30s 40s Think Roosevelt - it's believed he had GBS instead of polio. A vaccine currently being given to college kids has caused a string of GBS. 4. Supplements that stimulate the immune system, such as goldenseal and echinacea, have to be avoided. YOu don't want to stim an immune system that might have autoimmune properties. 5. Many GBSers considered my husband's case 'light' because he didn't need a vent. Many need long stays in the hospital with rehab in order to regain mobility. Steve was paralyzed from the head on down. Eyes had to be taped shut. Swimming was one of the best therapies he had when feeling started to return. Oh there is a weird pain too when the nerves start to talk to the muscles again. Neurontin may be used to help with this. We've gotten out of the GBS loop since visited our house. Steve was pretty much healed (except for his toes that talk to him this time of year) and we had to concentrate on . JHU had some good doctors - Koski was one we had contact with. I'll email you my phone number and you can have them call us Heller the author of CATCH 22 has a book on his adventures with GBS. Andy Griffith had GBS Rough days are ahead and they need to be patient. Younger patients normally fair better than older patients and the sooner treatment is started and the damage halted, the better. doris land > Doris, > > I remember that you said your husband had suffered from Guillain-Barre > Syndrome. A dear, dear friend of my family's has been diagnosed with it and > she is slipping away very quickly. I hate to take up your time, but wanted > to ask you if you have any advice, recommendations of great doctors, new > drugs in the pipeline, clinical studies or anything else you might think of > that we could pass along to her. > > I'd be glad to take your response privately. > > Caroline Glover > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 There's reference to it in 2 papers. Dianne Kiyomoto, RD ----------------------------------------------------------------- 1. Koffman BM, Greenfield LJ, Ali II, Pirzada NA. " Neurologic complications after surgery for obesity. " Muscle Nerve. 2006 Feb;33 (2):166-76. Dept of Neurology, Medical University of Ohio, Toledo bkoffman@... Bariatric surgical procedures are increasingly common. In this review, we characterize the neurologic complications of such procedures, including their mechanisms, frequency, & prognosis. Literature review yielded 50 case reports of 96 pts with neurologic symptoms after bariatric procedures. The most common presentations were peripheral neuropathy in 60 (62%) & encephalopathy in 30 (31%). Among the 60 pts with peripheral neuropathy, 40 (67%) had a polyneuropathy & 18 (30%) had mononeuropathies, which included 17 (94%) with meralgia paresthetica & 1 with foot drop. Neurologic emergencies including Wernicke's encephalopathy, rhabdomyolysis, & Guillain-Barre syndrome were also reported. In 18 surgical series reported between 1976 & 2004, 133 of 9996 pts (1.3%) were recognized to have neurologic complications (range: 0.08- 16%). The only prospective study reported a neurologic complication rate of 4.6%, & a controlled retrospective study identified 16% of pts with peripheral neuropathy. There is evidence to suggest a role for inflammation or an immunologic mechanism in neuropathy after gastric bypass. Micronutrient deficiencies following gastric bypass were evaluated in 957 pts in 8 reports. A total of 236 (25%) had vit B-12 deficiency & 11 (1%) had thiamine deficiency. Routine monitoring of micronutrient levels & prompt recognition of neurological complications can reduce morbidity associated with these procedures. ------------------------------------------------------------------- 2. Chang CG, -Huet B, Provost DA. " Acute post-gastric reduction surgery (APGARS) neuropathy. " Obes Surg. 2004 Feb;14(2):182-9. Fellow, Minimally Invasive Surgery, University of Texas Southwestern Medical Center, Dallas, TX BACKGROUND: A variety of neurologic complications have been reported after wt loss surgery. Recently, a new term was introduced to describe cases of postop polyneuropathy - acute post-gastric reduction surgery (APGARS) neuropathy, a polynutritional, multisystem disorder characterized by protracted post-op vomiting, hyporeflexia, & muscular weakness. The incidence, associations, & prognosis of this disorder have not been precisely defined. METHODS: A questionnaire about features of APGARS was mailed to all members of the ASBS. Surgeons were asked about their surgical & bariatric experience. Respondents were asked to report on specific cases where APGARS may have been present. They were also asked to report the pt's dx & which operation the pt had undergone. RESULTS: Of the 808 questionnaires, 257 were returned for a response- rate of 31.8%. The mean years in general surgical practice & in bariatric surgery were 15.3 +/- 10.3 and 7.5 +/- 7.4. A total of 168010 bariatric cases were performed by all respondents. 109 cases of neuropathy were described. 99 cases were believed to represent APGARS (weakness with hyporeflexia and/or vomiting). Vit B-12 and/or thiamine deficiency were present in 40 (40%); 18 cases resolved. 9 of 17 cases with B-12 deficiency resolved; 12 of 29 cases with thiamine deficiency resolved; & 3 of 6 cases with both deficiencies resolved. Vitamin deficiencies were not noted in 59 (60%), of which 30 resolved. The most common diagnoses were Wernicke's encephalopathy, thiamine deficiency, & Guillain-Barre Syndrome. The most common operation performed was gastric bypass. CONCLUSIONS: The incidence of APGARS in this survey was 5.9 cases/ 10000 operations. Given the potentially reversible nature of APGARS, surgeons should be aware of the findings & treatment. ================================================================ " jpaulis1 " <spaulis@...> wrote: I have had 3. Please check archives for my previous correspondence. Would love to share experiences. ================================================================= <allison_theodore@> wrote: Has anyone had a patient who developed GBS after gastric bypass surgery??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Jeeezz...this is shocking! Steph > > GARDASIL > In both cases, the onset of symptoms occurred 13 days after vaccination. > > If this is true, we are in trouble. > P Cockrell > > -------------------------------------------------------------------------------- > Guillain-Barre Syndrome > http://www.ninds.nih.gov/disorders/gbs/gbs.htm > -------------------------------------------------------------------------------- > > Guillain-Barre Syndrome. Reports state that two recently vaccinated 16-year-old girls - one from Illinois and the other from Mississippi - were diagnosed with Guillian-Barre Syndrome (GBS) following vaccination with GARDASIL. In both cases, the onset of symptoms occurred 13 days after vaccination. According to the National Institute for Neurological Disorders and Stroke: > http://www.nvic.org/Diseases/HPV/HPVrpt.htm > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 That vaccine just scares me. They are trying to make in mandatory in CT for schools. Thank goodness I homeschool!! I do not want that vaccine in my kids. I have vaccinated them with others, and at times wish I hadn't but this one oh no. It came out to fast, not enough research and to scary for me. hugs Micki Health Eating and Living Together he2gether_/ http://mouster71.blogspot.com/ www.stopthethyroidmadness.com _____ From: SSRI medications [mailto:SSRI medications ] On Behalf Of P Cockrell Sent: Sunday, March 04, 2007 3:54 AM ssri-Crusaders Subject: Guillain-Barre Syndrome GARDASIL In both cases, the onset of symptoms occurred 13 days after vaccination. If this is true, we are in trouble. P Cockrell ---------------------------------------------------------- Guillain-Barre Syndrome http://www.ninds. <http://www.ninds.nih.gov/disorders/gbs/gbs.htm> nih.gov/disorders/gbs/gbs.htm ---------------------------------------------------------- Guillain-Barre Syndrome. Reports state that two recently vaccinated 16-year-old girls - one from Illinois and the other from Mississippi - were diagnosed with Guillian-Barre Syndrome (GBS) following vaccination with GARDASIL. In both cases, the onset of symptoms occurred 13 days after vaccination. According to the National Institute for Neurological Disorders and Stroke: http://www.nvic. <http://www.nvic.org/Diseases/HPV/HPVrpt.htm> org/Diseases/HPV/HPVrpt.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 I talked with our local school nurse, I sent her information on the 82 side effects of this vacination. I hope she will pass it on to other school nurses. I feel if I got her involved, she could inform the local school board as " 0ne of their own " . She does not want mandatory Gardasil for her students. Maggs ________________________________________________________________________________\ ____ Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. http://farechase./promo-generic-14795097 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 I talked with our local school nurse, I sent her information on the 82 side effects of this vacination. I hope she will pass it on to other school nurses. I feel if I got her involved, she could inform the local school board as " 0ne of their own " . She does not want mandatory Gardasil for her students. Maggs ________________________________________________________________________________\ ____ Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. http://farechase./promo-generic-14795097 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 I talked with our local school nurse, I sent her information on the 82 side effects of this vacination. I hope she will pass it on to other school nurses. I feel if I got her involved, she could inform the local school board as " 0ne of their own " . She does not want mandatory Gardasil for her students. Maggs ________________________________________________________________________________\ ____ Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. http://farechase./promo-generic-14795097 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 I talked with our local school nurse, I sent her information on the 82 side effects of this vacination. I hope she will pass it on to other school nurses. I feel if I got her involved, she could inform the local school board as " 0ne of their own " . She does not want mandatory Gardasil for her students. Maggs ________________________________________________________________________________\ ____ Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. http://farechase./promo-generic-14795097 Quote Link to comment Share on other sites More sharing options...
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