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.

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

Richard,

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.

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.

Jerimy

Richard,

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.

Suzanne

[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]

Richard,

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.

Suzanne

Richard,

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!

Shannon

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.

Shalom

[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]

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!

Richard,

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

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

Richard,

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.

Shannon

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.

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.

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