New Member Needs Advice

    • Anonymous
      February 6, 2008 at 4:29 pm

      Hi Everybody,

      My name is Ian and I came across this site researching some neurological problems I have been having recently. So far I have not been given a diagnosis as to what is happening to me other than “peripheral nerve problems”. The neurologist is still waiting on my blood work and my insurance to sign off on the EEG/EMG tests. So let me give you all a little run down on what is happening to me.

      One month ago I wok up with the left side of my face feeling numb and tingling. My doctors sent me to the ER to do a CT and it came back negative. A week later my ulnar nerve went completely numb an I went back to the ER and they did a MRI or my Brain/Spine. It also came back negative for any type of stroke or blockage and they did not see any lesions that would point to MS. That made me feel a lot better. A week later my left leg started going numb and the numbness and strange sensations in my ulnar nerve spread throughout my entire left arm. Besides the strange sensations and numbness it started to get quite painful so I was given Neurontin at 300mg 3x a day. Now it has begun spreading down my back on the left side as well. Now I feel exhausted all the time and it is getting hard to walk. It feels like I am walking on a golfball in my left foot all the time. The sensations and pain moved to different places and I never really know how I’ll feel in the morning. I have also gotten very weak on my left side. Before this hit me I was a very active rock climber. I would climb every other day. Now I can barely pick up my 2 year old daughter without it hurting. It took me 3 1/2 weeks to get in to see a neurologist to get my EEG/EMG tests referred. My appointment was yesterday and the Neurologist upped my Neurontin dose to 900mg 3x a day. So far it has helped a little but pain and the uncertainty of what is happening to my body is killing me mentally. I just find it weird that it has only been affecting the left side of my body.

      I would like any advice on what to ask the neurologist for if my EEG/EMG tests come back negative. You all seem to have a great grasp on GBS/CIDP and neurology in general so any advice would be much appreciated. If you have had any similar symptoms I would like to hear about it or if you have any idea of what may be happening to me please let me know. Thanks for letting me vent a little.


    • Anonymous
      February 6, 2008 at 5:40 pm

      Hi Ian, Welcome to The Family. Have you had a lumbar puncture? That would tell if you have protein in the fluid, which would be an indication of CIDP or GBS. Sometimes there are people who have a low amount of protein levels that are still positive for cidp/gbs. Unfortunately there isn’t a test to confirm a dx yet. Keep a journal of your symptoms, treatments, tests etc. You also might want to keep a daily journal of your aches, pains, pain levels, treatments/meds, etc this will be helpful when talking to drs. It sounds more like cidp than gbs by the way you say its on the one side vs both sides. assymetrical vs symetrical. Feel free to ask as many questions as you have, or just vent. Take care.

    • Anonymous
      February 7, 2008 at 7:08 am

      hi ian & welcome,

      when they do the emg, make sure they do the ncv part too. the emg uses needles. the ncv used pads stuck to your skin. neurontin can go up to 5600 mg/day. gbs usually affects both sides of the body. take care. be well.

      gene gbs 8-99
      in numbers there is strength

new member needs advice

    • Anonymous
      November 20, 2006 at 4:28 pm

      To all: first I have enjoyed your heart and dedication in helping with family and friends with gbs. I am a friend of someone who was diagnosed in May on the week of his 64th birthday and has suffered slow progress because his insurance carrier has moved him now to 5 different institutions. The long story is a book which should be written some day, but right now I am desperately trying to stop the train and give me a chance to recover. His wife is at her wits end and has turned over negotiations with the insurance company to me in utter frustration. Basically once over the intial crisis in the hospital, he was prematurely moved to a nursing home. There he got pnuemonia and had to go back to another hospital in intensive care. This set him back a month. He was then transferred to a medical center for recovery and after another month there he was recommended by his neurologist to go to an acute care rehab hospital. The insurance carrier refused at first but then relented under pressure from this doctor and was admitted under conditions doomed to fail. Then insisted that reach functional targets each week and assessed after four weeks. It seemed he barely go started and the four weeks were up and he was shipped out again to a nursing home where he is now. After four weeks with an hour and half therapy each day, they decided he was not going to get any better in a hurry and he is being sent home this week. After six months he is just off his trac and stomac feeder but is just finally starting to lift his ams and legs. The question is: do we accept him at home and try to get him out for therapy or do we fight yet again to get him into an acute rehab hospital that his neurologist still insists he needs but is overruled by his insurance carrier? I know it is hard to respond to without all the details, but any advice or experiences along these lines would appreciated.
      Richard in Aiken, SC

    • Anonymous
      November 20, 2006 at 10:36 pm


      I really believe he should go to an acute rehab hospital! I know that is probably not what you want to hear. As you said, he has just come off the trach and feeding tube, and I still believe he needs constant medical supervision – that is to say that we are talking about a COMPETENT rehab facility. He does need physical and occupational therapy everyday, even though it may not be for long periods at a time, just as he seems to be getting at the moment. From what I can tell, he may still be at the point where his family are not able to care for all his needs. I am however giving you this advice thinking that he is in the proper facility, because I have spoken to patients who have been in rehab facilities who have become so depressed because of their environment, that it would be best that they do go home, and the family takes it upon themselves to try and find the best outpatient therapy that they can find. If the family does feel it is in his best interest to stay in a rehab facility, it could be a possibility that he goes home some weekends to ‘visit’, and see how he, and his wife manage during that time. This may also give him some incentive as well as a lift in spirits.

    • Anonymous
      November 20, 2006 at 10:53 pm

      I agree with Ali, he should absolutely be in an acute rehab. hospital until he is stable enough to go home and maybe do outpatient pt. They are really not doing him any favors by moving him around, switching doctors, he needs pt and ot to help him recover. I would fight however hard I needed to at this point to get him into a rehab. hospital. Good luck and keep asking questions. You are both in my thoughts and prayers.


    • Anonymous
      November 21, 2006 at 12:47 pm

      Thanks to both of you. It gives me courage to fight on for good facility for my friend Tim. We may have to take a risk. I have found one facility: Shady Grove Adventist Rehabilitation Hospital in suburban DC that will take him for a 10 day evaluation. The trial is all the insurance company will agree to at this time. The risk is that it is another move and if they reject him after 10 days or that the insurance company (Cigna) does not agree with the plan, then we are back to the idea of home care. I am going to try to make sure that the evaluation will likely be successful by having his neurologist talk to the medical director at Shady Grove in advance and if the probabilities of success look high, then I think it will worth the trial. Sadly our medical insurance system in this country has reached the stage where their doctors manage the care, not the Tim’s doctors and they do so with only medical records and the not by seeing Tim themselves. They don’t do so with any malice of intent. They just look at the prognosis for short term recovery and if it slim, then they want him home. As we know gbs is long term by definition. Some companies understand this but others, ours, does not. I will keep you posted because how this case is ultimately handled might be a good learning for others heading down the same track. Thanks, Richard

    • Anonymous
      November 21, 2006 at 7:01 pm


      I’d like to add my comments to what Ali and Jerimy have said, if I may.

      I agree with them about the rehab hospital, however, it sounds like the insurance company is being unreasonable. The result is possibly compromising your friend’s health and future.

      You may want to have his family consider getting an attorney involved, if you can’t get the insurance company to agree to a more realistic treatment plan for your friend. I would suggest hiring someone specializing in health insurance claims.

      I don’t suggest this lightly, because I really hate how our society has become more and more litigous (sp), often clogging the legal system with frivolous claims, but in Tim’s case, he just may need someone with a “big hammer”, who knows how to play the game.

      It really doesn’t matter whether the insurance company is being malicious, or just ignorant. The result of either is just as bad for Tim. It’s time to stop the madness.

      Best wishes in your quest to help Tim, and please let us know what happens.


    • Anonymous
      November 21, 2006 at 9:21 pm

      [COLOR=”Purple”]Hi Richard. This subject is close to my heart as I worked on a rehab unit and saw the miraculous recoveries that can occur with the right treatment. Unfortunately, Insurance makes it nearly impossible for everyone to get an equal chance. At our hospital, a patient had to be able to do 3 hours of therapy a day to be admitted to the unit . Once admitted if they could not do the therapy or couldn’t go home , they were sent to sub-acute care, which means a nursing home. Supposedly, they should be able to get P.T and O.T there, but too many times that doesn’t occur and the patient gets no better. If you have a great doctor, there are ways to get an insurance to cooperate, sometimes that means tweaking the diagnosis, such as adding on to the GBS dx, and sometimes you just have to be inventive. I’ve seen it in action. Continue to fight for your friend and I wish you the best all the best. Vicki[/COLOR]

    • Anonymous
      November 22, 2006 at 11:40 am

      Suzanne, yes we have come to the same conclusion. We spoke to the ombudswoman for social services in the State of Virginia and she says that the nursing home is required by law to give 30 days notice so that proper discharge planning take place. In Tim’s case he was told last Friday that he would be discharged on Monday. The nursing home says that Tim is a hospital patient and so this law does not apply to him and so we are seeing a lawyer who deals and litigates in health care matters at 2 today. You may ask where was the nursing home doctor in all of this? Well, I called the nursing home doctor on Friday and asked why he signed the discharge order and his reply was that the insurance company had cut off payment and if we gave them a credit card, he could stay, but that his wife would become a pauper very quickly. Therefore he thought that sending him home was better for his wife. I subsequently found out that if the doctor kept him after payment was cut off by Cigna, he personally would have to pay Tim’s bill. He conflict of interest is incredible. I think I have enough to write a book about this case, but in the meantime we have to get him to a safe place where at least he can have a decent chance for recovery. I keep thinking that there is no way the insurance company can behave this way, but I am told I am naive. I will keep you posted. Thanks, Richard

    • Anonymous
      November 22, 2006 at 3:12 pm

      To all: just an update, we have received legal advice indicating that the nursing home is required by the laws of Viginia to give thirty days notice in writing prior to discharge home giving time for a formal discharge plan to be prepared. This gives us time to try to work things out with the insurance company for acute rehab. So the fight continues, but I think we have a chance. Richard

    • Anonymous
      November 22, 2006 at 7:25 pm


      I’m so glad to hear that you have moved the fight for Tim’s health up a notch. I have no doubt that you will be able to improve his care considerably by continuing what you are doing.

      Sorry to say, but heath insurance companies can be very cynical – they will say something, and assume that you will believe them, because you have no other information. That ‘s where the attorney can really help.

      Good job! Please let us know how things progress.


    • Anonymous
      November 22, 2006 at 7:45 pm


      You’re such a good friend to Tim and his wife. They’re so fortunate to have you in their lives. Keep up the great job you’re doing, but remember to get some rest!


    • Anonymous
      November 24, 2006 at 7:28 pm

      To Jerimy, Shannon, Suzanne and others following this case. I talked today with Tim’s doctor at the nursing home and he gave a very thorough explanation of the the way the insurance company plays the game today for gbs patients and they aren’t the only ones. It seems that from day one of the crisis, the goal is to get the patient home as quickly as possible and only provide up to four weeks of acute rehabilitation at an appropriate stage that would maximize the benefits to the patient. This policy change came three or four years ago because the cost of acute rehab over a six to eight month period was very high, as much as $30K per week. So they put gbs in the same bin as spinal cord injuries and stoke patients and assume that once the initial medical crisis is over, they will plateau in terms of recovery and so for costs sake, the goal is get them home where basic custodial care is borne by the family and not the insurance company. In case of gbs or other similar nerve damage situations, if the patient recovers at home and can meet the criteria mentioned above for four weeks care, then they will admit them to an acute rehab hosipital for that period of four weeks.

      I would appreciate it very much if anyone reading this knows anything about how the insurance companies operate in the this regard to give further evidence to what this doctor said, I would appreciate it very much. If this is the case and in Tim’s case this is clear, then I think we have to fight for better recognition of the gbs and the need to rehab as a MEDICALLY NECESSARY for recovery. Thanks, Richard

    • Anonymous
      November 24, 2006 at 7:41 pm

      GBS was the most terrible thing that happened to me. I got the disease in April 9, 2006, the day before I was in my bicycle with my family, next day I could not even stand up, I could not believe it, I was due to go to Italy next day, thanks God it happened before my trip. Anyway, it was horroble. sorry for my english, but I am a Mexican and at that time I was living in Krakow Poland for my work, I had been living there for 3 years, as an expat, life is easy and you enjoy the best, but when I was due to go to an appointment for my next assignment, thats when it happened. We were having family visit in Poland, I was riding my bike and discovering new trails, and suddenling next day I could not stand, at the begining I tought it was just pain, because I was trying new trails, but later in 6 hours, I could not move, the ambulance needed to go to my home and at the hospital I was diagnosed GBS. When I was at the hospital the company I am working for, send me some information related to the disease. I just put them in the drawer, I said, If there is someone that will help me that will be God. Next morning to my very much surprise I could not even move, but my right hand and only rested in the chest. Then I realized that if this was the case, it was for a reason. God loves to be praised, I was going to learn that. So there I was, the scariest thing came later in the day, when they needed to open up my neck and stick a device to change my plasma. I was so afraid, that when I was at the operating room, I did not know how to handle it. So I remembered a passage in the bible “revelations” that describes the face of Yeshua (Jesus) like a bright sun, I concentrated myself on that, I suddenly evevrithg was finished, no pain and nothing. We called on the phone a believers friends to ask them to pray for me, the first night I caught developed in me. I could not cought, my nerves did not responded, the doctors just watched and told us to be alert and call them if more complication arised. Just as a note, the Polish hospitals installations, not equipment are well 30 years old, but the attention of the doctors and nurses if first class in the world, but you believe what you see, and it was scary. Anyhow a I started my plasma treatment, by the 3rd day there was a holiday in Poland and doctor where taking the weekend off. I told the doctor, that by the time he will return, he will see great changes in me. Aside he told me, that he admired my positiviness , but that I should not be very enthusiastic. Anyhow we proved him wrong, thaks God, on Monday I was walking, going up and down the stairs of the hospital without assistance. All the staff was surprised. In 18 days I was out of the hospital and due to Copenhagen for a Benny Hinn crusade, we stopped in Berlin for sightseen, which to tell you the truth I was not able to walk for a long period, as the same as the first two days in Copenhagen, but later we traveled for a Jewish Machol dance seminar in Hungary, where I danced my body off. It so good to be able to move without assistance and supervision.

      I thanks God, the hospital staff and my family for all the support.

      How do I think everthing started:
      1. Living in a foreing country, but I have lived there already for 3 years.
      2. I was eating KFC (Kentucky Fried Chicken) every weekend, by the way my family always told me It seemed to be undercooked, which I never believed.
      3. Poor diet
      4. Believing that you own your life

      After the fact, I waked up for at least 3 month feeling my arms weak.

      I moved to Italy, I changed my diet, here there is no KFC, but anyway I do not eat pasta and pizza but just once per week.
      I have joined a swimming class twice per week
      and my post symptoms completly disapeared.

      So my recommendations are:

      If you are or have been thru GBS:

      First focus in God, there is no one else that can help you.
      2. after the plasma treatment, you will feel much, much better, every time you go.
      3. do not be affraid to go back to your normal life, we are no supposed to be in be and without moving, it takes time, but focus, and you will do it, there is no pain, just walk, run , dance, etc.
      4. change your diet, I think that the secret is there, do not eat fat, high proteins like pork.
      5. Change your habits, life is one, and should be wonderful
      6. Love GOD for the new opportunity he just gave to you.

      My life has changed so much, that I will never go back to were I was, I have learned my lesson, and God has been good. Why did it happened, probably because He loves us so much, that some of us, have a hard head and require an special treatment.

      Anyway, I hope you the best if you are going thru GBS or you have been. I count myself as a pride winner. but I could not done it myself without God, do not give up. Focus, He is always waiting to be called, no matter what you have done in the past. If He did it for me the lowest of all, you should expect the best for you.

      Love you. Hope that my story helps you, to stay strong and believing, He will just do it for you.

      Aftermath. I am living now in Italy for a period of 3 years. I am better fit than before, stronger, and happier. I am do to go to my home country in 7 days and tell everuybody what happened to me.

      I bless you all: Yevarejeja Adonay veichmereja, Adonay Pana veleja vicuneja, Isa Adonay pana veleja veya sem leja Shalom.

      Just a powerful Jewish blessing.

      Ciao. I you want to contact me feel free.


    • Anonymous
      November 24, 2006 at 11:41 pm

      [COLOR=”Purple”]Hi Richard. I’ve read this thread over and over, trying to figure out how to respond. I had to quit my job after 30 years in March due to CIDP, but the last 2 years were spent working on an acute Rehab unit (R.N). It is a different world compared to other units such as medical, surgical, etc. God bless the social worker or case manager, whose job it is to get the patient certified for the necessary days and work with the insurance company to get more days if needed. It is very difficult to work with any insurance company but I must say your friend’s insurance company takes the cake. A lot of what you have been told by facilities and the insurance company doesn’t sound right(I’m putting it nicely). Right before I left, I helped take care of a GBS patient and he was on our unit for 2 months. Each diagnosis ie.stroke, spinal injury is preassigned a certain amount of days for acute rehab. The Patient is assessed for progress, functioning, etc. and if not deemed safe to return home, a submission is made to the insurance company for more time in acute care. If the doctor has done thorough documentation of the patient’s progress, or lack of, in the medical record, and can defend his recommendations it is usually not a struggle to receive more days. Now I can only speak for what I experienced and I’m in Kansas. Other states may vary. The best thing right now is that he has you as an advocate and hopefully the insurance company will finally do the right thing and give him the time he needs on acute rehab..I hope this makes sense. After reading the above post I just keep thinking I shouldn’t eat Kentucky Fried Chicken anymore! Take care and keep us updated. Vicki[/COLOR]

    • Anonymous
      November 25, 2006 at 12:41 am

      Hi Richard ~ I just want to say “thank you” for advocating for your friend. You are now officially part of our “Wonderful Caregiver Group” 🙂 What you are doing is as valuable as being in the home with the GBSer. You will never know how huge and precious your part is. Thank you big time!

    • Anonymous
      November 27, 2006 at 7:16 pm

      To all, thanks for the responses. The information and encouragement have been invaluable. Today, the insurance company cut off paying the nursing home but the nursing home gave Tim his 30 day notice as required by Virginia law. The law does not deal with who pays and we will fight for this from the insurance company despite having cut him off. However, at least he is safe for the time being and they also agreed that they will continue to give him his therapy. (By the way, Tim was thrilled to tell me he was able to turn the pedal on complete revolution on the bike Saturday. Not bad for someone deemed to have “plateaued”.) We also have news that his doctor has contacted a local rehab hosiptal and he believes they will take him as a matter of “medical necessity”. This hopefully will allow us to appeal the decisions taken by Cigna’s own doctor who, without seeing Tim, had declared that he had “plateaued” and therefore unlikely to recover. Tim will go the rehab hospital on Wedns. for an evaluation. We are keeping our fingers crossed on that front. So all in all today was a good day despite the insurance company cutting off payment to the nursing home. By the way, although we are fighting Cigna, as I mentioned before most of the other carriers also do not give proper consideration for gbs sufferers and therefore the need to fight generally for changes in this regard. Thanks, Richard

    • Anonymous
      November 27, 2006 at 7:40 pm


      Excellent news about Tim’s progress! As a GBS patient myself, I can tell you that quite a lot of my recovery so far has taken place long after the doctors said that I had “plateaued”. The damage done by GBS takes a long time to heal, but tell your friend not to be discouraged.

      Please keep us posted on how things go, and tell Tim that we are all pulling for him.

      Best regards, Suzanne

    • Anonymous
      December 1, 2006 at 4:06 am

      I am absolutely amazed to read about the insurance system over there and people being refused ivig because of costs etc and how hard it is to get social security.

      We have a public health care system here (medicare) plus a private health insurance system. Generally there are long waiting lists in the public system which is why many people opt to pay private health insurance (you also get your choice of doctor, hospital)

      When i got GBS i was treated through the public system even though i have private health insurance. The main reason was i live in a small town so there is only one hospital to go to. I was referred to a neurologist at a major regional hospital (also public) I could have asked to be transferred to a private hospital but once i was in ICU i dont think it really mattered – it’s not like i was going to get a private room or anything. I was told the cost of a bed in ICU was $1500 a day. I spent 4 weeks in ICU and during that time our entire state was on code red – no ICU beds available anywhere. Even then i was not pushed out before i was ready. The public health system in our state has had a bad wrap lately – cant get doctors in regional cities so a lot of overseas trained doctors (one from US dubbed Dr Death because he was involved in the death of so many patients and it was later revealed he had his licence revoked in US) But i cannot complain about the level of care i received. I was transferred back to my local hospital for rehab. I only spent 10 days there before i was sent home but they said they wouldnt send me home until i no longer required PT. They would rather keep me in as an inpatient if daily pt required. And none of this cost me a cent. I later found out there is a 35 day limit on how long you can be in a public hospital before you have to start paying – unless it is deemed medically necessary (which i was)

      I actually work in the insurance industry (or did before i got gbs) although not in health insurance, and although have heard of insurance comapnies being difficult certainly nothing like what i have heard here.

      As for social security, they make things difficult for you and you have to fill in copius paperwork, but basically as long as you have a medical certificate you can apply for sickness benefit which is the same as unemployment benefit. At the moment i am not getting anything because of my partners income but when he was home looking after the kids while i was in hospital we were at least getting enough to live on.

      I’m not trying to say we have the perfect system i just though you guys might like to hear how it is in another part of the western world. I cant believe that things are made so hard for you over there

    • Anonymous
      December 1, 2006 at 10:52 am

      Yolanda, thanks for your post. Tim is also a Canadian and I am wondering if he could not get better care there. The Canadian system is a one tier only system, but seems to provide for whatever the doctors call for. The only limitation, which is huge, seems to be availability. I would love to hear from any Canadian who personally or knows someone who has or had gbs in Canada to find out how they were treated. I can’t imagine it being worse than here but I don’t know if it is worth the risk of getting him there, re-establishing residency to get the care he needs. Thanks, Richard

    • Anonymous
      December 3, 2006 at 5:49 pm


      I’m just a caregiver and am not a doctor or nurse, but I feel pretty comfortable in saying that your friend probably hasn’t plateaued yet. From everything I’ve read, the nerves will continue to regenerate at a steady pace for two-to-three years, and that’s about the time the patient will reach a “plateau” in their recovery. Tim still has a long way to go, if I remember correctly when he came down with GBS, and will probably/hopefully continue to show improvement.


    • Anonymous
      December 29, 2006 at 10:27 am

      To all that have followed this story. The situation for Tim has been a nightmare for the past month. He remains at Fairfax Inova hospital without insurance coverage since Dec. 5. His attending doctor refuses to discharge him home because he believes that he needs inpatient rehab. Our appeal to Cigna and his former employer, the Bank has not yielded any success and so he is stuck. In the meantime we are trying to get him to Canada with little success either because of the availability of beds. We are waiting day by day. It looks promising for next week to come to Ottawa and we are praying that finally he will get a break. I will let you know when we get him here (I am now in Ottawa trying to make things happen in my old home town). Once he is here and getting proper rehab, we will try to recover the cost of the hospital time through legal action if necessary. All the best to everyone and I hope for a happy new year to all. Richard

    • Anonymous
      January 11, 2007 at 11:03 am

      Just to let everyone know that Tim is now safely in Canada. He is in a wonderful facility called St Vincent’s hospital in Ottawa that caters to longer term care and rehab. The place has been completely renovated and the staff are wonderful so far. He is absolutely thrilled with his daughter and grandchildren and neice in Ottawa. His new doctor also believes he will make a full recovery. So we are finally in a good spot and thank God for socialized medicine in Canada. I will keep you posted, Richard

    • Anonymous
      April 15, 2007 at 3:51 pm

      To those that have been following Tim’s case, I can report that he is continuing to do well in Ottawa. He can get out of bed into a wheelchair by himself and wheel himself by using his feet down to the cafeteria for coffee at least twice a day. He can stand and walk two steps unaided. He will have a small operation next week to close the trac finally since it did not heal over. He will also start even more acute rehab. His hands continue to be his bigest problem. He lack of therapy earlier and not getting a special glove and splints have really set him back. Hopefully there is not permanent damage. All in all his progress continues and he vows to come back to Washington to see his doctors both those supporting him and the one doctor that had said he had plateaued and show them that he as fully recovered. May 17, four days after his 65th birthday will be the anniversary of the onset of GBS for Tim. All the best to everyone, Richard

    • Anonymous
      April 16, 2007 at 9:55 am

      Please give Tim my best and any improvement is good. I pray all goes well for all and hang in there things do get better just a little slower. Take care and be strong.

    • Anonymous
      October 2, 2007 at 4:44 pm

      My sister has been just diagnosed with this syndrome and I am beside myself. She is in so much pain and there is not much that can be done about it according to her neurologist. She has been in a short term rehab for the past 3 weeks and she does not need to be there. It is basically for the elderly to go to so they can pass on. I need to know how can we get her into Shands Hospital in Gainesville or to the Mayo Clinic in Jacksonville. Does a doctor have to do something to get her there, can we just take her there. She has insurance but of course they are giving her problems. She is so depressed and I do not know how I can help her. She only has myself and her fiance who has been an angel along with his parents. Can anyone suggest on what I need to do to help her? Sorry this is so long but I am new to this and do not know anything about it. Also, does anyone know if this is hereditary because I have the pain and numbness in my hands and feet also but I can still function. I went to every doctor and they all thought I was crazy. I am worried that my children will get this. Anyone can help I would appreciate it.

    • Anonymous
      October 2, 2007 at 9:18 pm

      hi angel & welcome,

      ‘she is in so much pain and there is not much that can be done about it according to her neurologist.’ WRONG. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it.

      call the jacksonville mayo & find out their rules. also there is

      – dr stephen block 1411 No Flagler Dr, W Palm beach

      University of Miami, School of Medicine, Department of Neurology. Dr. Bradley[He’s the Chief Neurologist, teaches medical students, writes medical text and periodicals, and is heavy into ALS research] , if not then on of his associates Dr. Mauricio Concha with Neurological Associates in Sarasota. he is moving [locally?]… later by another, I was on a heart monitor and close to a respirator. I have nothing but wonderful things to say about Dr. Concha!! Last I heard, he was in Sarasota, FL

      Manley Kilgore – Baptist Hospital in Jacksonivlle 904-396-2400. Rehab doc Howard Weiss 904-296-9939. He is also a resident at Brooks Rehab Hospital. They treat every GBS patient in Jax and he is also very willing to help.

      If Tallahassee is not too far of a trip for you might want to get in touch with the Tallahassee Neurological Clinic at (850)878-8121. They have done wonders with me

      Tampa try Dr. Steven Sergy or one of his assoc. 813-872- 1548 has a great reputation with GBS/Miller Fisher – he practiced in Boston – he has been nominated as President of the Nero for the USA so you might have to take one of his Assoc.

      tampa Dr. Chichicova and she has experience with GBS phone #974-2201

      take care. be well.
      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 4, 2007 at 8:55 pm

      Angel, Gene has given you some good advice and all I can do is reinforce the importance of getting the doctors on your side. You need a doctor who will champion your case with the insurance company. Perhaps one of those Gene has mentioned will come to the rescue. The insurance company sees GBS as long term and they really will try to get her home so that you and her fiance will bear the burden of her care. She will need a lot of rehab. My friend Tim is doing very well and will be home this week but he is still in a wheelchair. But this started with him on May 17 of last year and he is now only able to come home. I firmly believe that if he had been given proper care and rehab much earlier, he would be walking today and his hands would be functioning far better than they are today. In sum, she needs serious in patient care.
      And for what is worth, I have done a lot of research into GBS and it does not seem to be hereditary, but a doctor is better qualified to allay your fears on this matter. It seems to be totally indiscriminate and rare. Please post developments as I would be happy to help as best I can as I am sure others will as well. Richard in Aiken, SC