New to group..diagnosed in October 2011

General General GBS Discussion
1

I have no memory of getting sick other than the horrible pain I had in both my feet for many months. The memories I do have are very vague, dreamlike, and extremely odd. I was on a ventilator for months then as far as I know right in to physical therapy. My fiance and family seem to have faint, blurred memories of this first part of my diagnosis and start of recovery. I was in a great rehab hospital for 6 months remembering only bits and pieces but definitely remembering the pain. I am, unfortunately, covered by medicaid in Texas and in March of 2012 was moved to a nursing/rehab facility. I never had physical therapy the entire 6 months I was in the nursing home. My muscles and tendons became stiff and I was only able to get myself home after my 15 year old daughter discovered a youtube video on how to use a slide board. I had to sneak the one slide board the home had into my room and with the help of a few loving and caring aids I learned how to move myself from chair to bed to toilet. I will say that I am still waking every morning peeking out from under my covers to make sure I am at home and not in my horribly beaten up nursing home room. My nursing home experience is another story best left for a longer post at a time it does not make me cry and paranoid.

I have been home..after demanding that I return home..since Sept.7, 2012. I've had only a few rounds of physical therapy due to my insurance refusal to approve more therapy. It's been a year long battle with insurance and lack of proper office diligence from my doctor to get any kind of therapy. I'm obviously very frustrated, terrified, and depressed that I am not one of the success stories of GBS.

I have so many questions I don't know where to start. At this point in time I am able to stand with a walker but, I stand on my tippy-toes. My legs are stiff at the knees and my ankles only bend downward. I've had a great deal of pain in my legs and hands but this past few weeks, especially this past week the pain in my legs is getting unbearable. My heart races and I feel panicked because I can find no way to stop the pain. And, it's difficult to describe. Somewhat between an ache and burning. To help ease the pain after taking my usual meds, I sit Indian style, legs crossed, on a heating pad leaning forward on my elbows. It seems a rather odd position but it tends to cut off the circulation a bit easing the pain and pressure. I do this for an hour or two just to be able to function the rest of the day. I despise sounding like a wimp. I have a doctors appointment this coming week but I'm feeling very uneasy about getting any results. I'm at the point of desperation. I can't resign myself to such horrible unending pain. I'm very scared.

I am a mother of two girls, one with several disabilities and care for my 80 year old mother, who, uses a walker..quite well at the moment. Are there advocates who help patients like me get through insurance problems and red tape, try to find a better plan, a better way to live and recover? What are the commonly prescribed medications to get through this kind of pain? Or, is this worsening pain normal during recovery? Also, I am slowly recovering the feeling in both of my hands but they seem even more stiff and painful than before. They are difficult to control. Can this be considered normal?

Please, any advice?

Mari

2

I was diagnosed in February 2013 with GBS. I still have extreme fatigue, neuropathy, tingling, electric shock, and feel sick all over. I too am not one who is recovering from GBS. I have seen three specialist and now headed to Mayo Clinic to see if there is a third identity? I have had six round of IVIG Immunoglobulin. I never have a good day physically. I cannot stand but short periods of time! I cannot sit due to cramps and to neuropathy. I have week muscles and poor circulation. Keep fighting to get well. Don’t settle for anything less than good answers and peace of your own mind! Richard / 870-■■■■■■■■ if I can help? Praying for those who are sick tonight!!!

3

I'm sorry to hear you were treated so badly and I am sure your recovery has been delayed because of it. However, for me the increase in pain and burning was always a good sign, indicating that some more muscles were being activated. As for your stiffness and lack of mobility in the legs, I would really try and get some more physio funded. The calf muscles particularly become shortened when you're immobile for long periods and if they are not worked on quickly they can shorten permanently and then AFOs are usually required to help lift the toes when walking. Good luck and I hope your recovery progresses.

4

Mari,

I was diagnosed in August 2012 with GBS. I went downhill quick. I was quadriplegic for months and finally sent home I believed to croak. I had a few friends and neighbors that would come into my home a give me physical therapy as like you, the Home Health Care could not justify sending therapists since I couldn't move. I had extreme pain in my legs, back and arms. The doctors had me on Oxycontin and Oxycodone. Those pills will drive you insane if taken long enough.

As word of my condition spread, a person that I had once worked with was developing a light therapy for pain management. Since it seemed like I had nothing to lose as the doctors told me I would never walk again and be confined to a wheelchair, I gave this light therapy a shot. I started the red light therapy on 11/19/2012. Ten minutes twice a day. Two weeks later the severe pain had subsided to an ache. I tosse3d the pills. Then surprisingly my right arm and leg began to move ever so slightly. By the end of December I had movement in both arms and legs and barely had any discomfort. Home Health Care came to see me in January 2013 and was shocked at my progress. Shocked so much that they wrote a report and scheduled a Physical Therapist supervisor to see me to do an evaluation. The supervisor came and left my home in disbelief as to what he saw. The next thing I knew, the telephone rang and a physical and occupational therapist would be coming to my home to start therapy. Yes, the insurance company balked at this but ended up okaying it. They came and started therapy. They stated that they felt I might be able to stand and take a few steps by December 2013. As January passed and the fact that I was using the red light therapy my aches went away and my strength grew. By the end of February 2013 I was standing by the side of the bed for 3 minutes. By the middle of March 2013 I was walking with a walker. In April I was sent to outpatient therapy. By July 2013 I was walking mostly normally and was given permission to return to work part time 12-18 hours a week. I am still working part time close to 20 hours a week. I have been able to work in the yard doing some things.

The doctors are amazed as to my recovery and still cannot believe it.

I really have to say that the red light therapy that I believe took away the pain and helped stimulate the blood flow is probably the reason my recovery sped up. Of course there were prayers said many times. I believe the man upstairs sent this red light therapy to me. I stopped using the red light therapy in May and the aches and pains have not returned.

Mari, don't give up hope. I never did. Yes, the stiffness took a while to go way but it did as did the other symptoms you described. By the way, I'm 67 years old and am feeling a lot younger and am putting that nightmare behind me.

The web address for the light therapy is: www.lightspausa.com.

5

My name is Dave Seaman. I was diagnosed in august of 2005, spent nine weeks in a coma during which I had horrific endless hallucinations, then was paralyzed from the nose down, on life support and could not speak. Your story is very close to mine. I was released from the hospital in 2006. I have failed to improve by much at all. I waited or five years in Boston. My wife divorced me after 22 years of marriage, though this WASS tyhe second very serious illness I endured within a single decade. Some people aren;t strong and I do not blame her, though I am strongly dissapointed. After five years- and a LOT of research on my own- I accepted that I would not be healed and was forcede to be declared disabled.

I now strongly suspect that I suffer from Chronic Fatigue Syndrome- an illness that tends to settle in following a virus.

I have different types of pain in my body, the spine is the worst, but overzealous physical therapy destroyed several muscles and when they are over taxed the pain is outgrageous. GBS is the ONLY condition for which "no pain no gain" is dangerous in physical therapy. Several different books have stated this and my own doctor (Julie Silver who now only does research and publishes) confirmed this. Sadly, they had me on a stationary bike day after day and a great deal of dammage was done.I believe that stress is a strong factor in the onset o the ilness and stress can also strongly inhibit recovery.

6

Mari-

God, your story moves me very much; so much matches my own story. The difference is that the onset of my illness was in 2005 and I was released from the hospital in 2006. I was VERY fortunate that I lived in Boston at the tyime and was in the top medical facilities in the country. I am also lucky that my insurance company covered every single cent of my long illness. You can read about my circumstances on my blog, though It is chronilogical and I've only gotten as far as the coma that comes at the onset.

I too have failed to thrive. I've learned that the text bpooks and research done that express a percentage who DO return to "normal" life are drastically skewed if not blatant lies. My own research found that 37% of those afflicted are rendered permanently disabled.. I used to be a full time, VERY succesful musician. Now I am completely disabled and spend most of my time unable to rise from bed.

I'm not certain what state or city you're in, nor how much energy you have to fight. I would begin by contacting your state insurance commision. Explain that GBS is so rare that on the insurance pull down menu it isn;t even listed\; they must select "neuro-muscular- other". If necessary, obtain a lawyer, perhaps you can get one who will work on contingency. This has the potential to be a high profile media case.

At the same time, we all have a speciic contract with our insurance company and those people will let you die rather than cut you any slack. After five years of hoping to recover and OT recpovering, I spent all of my savings, sold my Manhattan home, put my daughters through college (my wife of 22 years filed for divorce while I was in the coma) and then went on proffesional pension dissability ($1200 a month) where my boston expenses were $6000 a month. I had to leave Boston and have moved to my family farm i9n New York state. My Blue4 Cross of Massachusetts does not cover me in New York. And trust me- they refused to cover me. They contionued to collect the pre miums, but the contract very s[pecifically states that they will noty dcover me in New York State.

So I had to switch to Medicare and only then because i was dec;lared disabled in 2009. Thaty decision is difficult to make because everyone said it would take two years. After four years I accepted that the career that had been VERY hard to come by was now in the past. So my siuggestion tyo you is to have yourself declared disabled as ast as possible because tyhis is something that can be reversed and the only thing more pathetic than someone who has been ravaged by GBS is someon who has been ravaged by GBS and is poor. If you are lucky and manage to recover , then go back to work, but waiting as I did cost me hundreds of thousands of dollars.

Then scrutinize the contract between you and your Health insurance carefully.

Lord, if thjere is anything more I can do, please conall upon me.

Dave

7

Mari I wish you success with your recovery. I've read about symptoms and issues others confront on a daily basis.I'm now 15 months post onset. I came home from the hospital and rehab thinking now I can look forward to recovering.but that's not fully the case. Others including you have spoken of leg pain which have just started with me.My leg pain is worse at nite tho sometimes painful days.This is new for me and it can't resolve itself fast enough. Each of us know others with worse issues but GBS sure can take a toll on us.I thank you for sharing and only wish you relief and success with your battle.

8

Thank you for responding to my plea for help. I did not ever expect to heal in any short amount of time due to the severity of my illness. I did certainly expect to be at the very least walking with a walker by now. I mean, after just over two years. I have only recently been plagued with fatigue, thankfully, but still have the neuropathy and jolting feelings in my feet and legs. Mostly my feet, though. I have a jerking motion in my arms and legs that is being controlled with baclofen and diazepam when needed. I hope you can find the answers you are seeking and will pray for you. I do believe it takes a great deal of time to recover from GBS depending on the severity and length of time from onset to complete "downfall". I plan to walk again and have no doubt about that. I just pray this pain will subside enough to be bearable and not bring me down so much. I DO know there are a lot of people out there responsible for my continued illness and paralysis. I just don't know what to do about it, what steps to take to get to the bottom of why I didn't receive proper care, and nailing the SOB's (excuse language) responsible for the horrid way I was treated and cared for causing me needless pain and suffering and this ridiculously absurd length of recovery.

Blessings to you and please let me know what you find out...

Mari

Heavenboundminister said:

I was diagnosed in February 2013 with GBS. I still have extreme fatigue, neuropathy, tingling, electric shock, and feel sick all over. I too am not one who is recovering from GBS. I have seen three specialist and now headed to Mayo Clinic to see if there is a third identity? I have had six round of IVIG Immunoglobulin. I never have a good day physically. I cannot stand but short periods of time! I cannot sit due to cramps and to neuropathy. I have week muscles and poor circulation. Keep fighting to get well. Don't settle for anything less than good answers and peace of your own mind! Richard / 870-476-6622 if I can help? Praying for those who are sick tonight!!!
9

I agree with the thought that the increase in pain could be a return of activation, the nerves rebuilding. My mother reminds me of this every day. I have spent the past 17 years caring for my daughter's special needs and now my mothers so I am unfortunately stuck in the system as a Medicaid patient with a managed care plan that doesn't want me up and walking again. I discovered that the person making PT/OT decisions is often a nurse and sometimes a PA. Few people know enough about GBS to make educated decisions about someone's future recovery. I've been told so many different things about what my provider will cover that I have given up on finding any help at all. With my daughter, I had an advocate to help us along with her insurance and schools, ect. If only I could find someone to help me figure out the truth. I just need a little truth right now. I am now on SSI disability which helps some but I actually believe I had better luck with straight Medicaid. I have a problem with my memory and with concentration so navigating through insurance, not to mention doctors appointments, my daughter's care and the rest of my beloved family, has become an absolute nightmare. I'm praying for strength and a warm intelligent body to come to my rescue. In the meantime I'll remain strong as I have always been and keep working these muscles. Thanks for your response. It is much appreciated.

Mari

Swiss_milkmaid said:

I'm sorry to hear you were treated so badly and I am sure your recovery has been delayed because of it. However, for me the increase in pain and burning was always a good sign, indicating that some more muscles were being activated. As for your stiffness and lack of mobility in the legs, I would really try and get some more physio funded. The calf muscles particularly become shortened when you're immobile for long periods and if they are not worked on quickly they can shorten permanently and then AFOs are usually required to help lift the toes when walking. Good luck and I hope your recovery progresses.

10

Dave...I have been on disability for a year now but have had to choose a managed care plan that does nothing to help be recover. So, I am pretty much poor, as you put it, and without much help at all. I would have believed caring for my daughter would have taught me how to navigate the system but sadly, not enough to help myself. Children are different. Caring for a disabled child along with my aging mother has become an extremely heavy load. If it weren't for my fiance, Tony, I would have lost my family, everything, in the year I was gone. I have to add that I am so very sorry to hear of your struggle with divorce. How sad it is to know how this retched disease destroys more than muscles and nerves. And, in my case, two years of memories.

So much wrong was done to me that I don't know where to begin with an attorney. Do I want to knock some heads? Absolutely! Who do I go after first?? The nursing home that wouldn't feed me because I couldn't ask to be picked up, carried to a wheelchair and taken to the lunchroom to be fed? The 'restorative aids' who were supposed to be working with my withered legs everyday? The director of nursing who slapped my legs and told me I was faking and to stop kicking my legs around because I had no control over them? Oh, geesh, I have so much anger and disgust about what was done to me but the thought of finding a lawyer scares me. I have no idea why. What if my memories aren't enough to help me? I have a few friends who started checking on me as aften as they could while I was in the nursing home which is why I survived what I did. Or, at all. Does Medicaid care if I was getting no therapy in the home? Can I prove to Medicaid that the nursing home gave me no therapy even though I feel certain they were paying for it? I have so many questions. I am in the shape I'm in not only due to the GBS but for the lack of care and severe treatment I received for 6 months. Also questionable is the managed care who covers my care. Getting so many different answers from them I hardly know where to begin to nail them into making changes.

I'm so sorry for the vent. But, I'm so much at a loss. It's been a year since I've been home. Is it too late to do anything? I'm so tired from the constant pain and fighting. Just really on the edge. Thank you so much for all the sharing you've done. Thinking about others is the best way to overcome our own troubles. I will pray for you and for both of our spirits which are obviously quite strong. Please keep in touch if possible. I don't rant often but you opened up a lane through which I could drive my feelings down a little. It was much appreciated. I needed to drive down that path a bit and try to remember things I know may be of help to me tho very painful.

Again, thank you...

By the way, I live in Texas.

Mari

Dave Noel S said:

Mari-

God, your story moves me very much; so much matches my own story. The difference is that the onset of my illness was in 2005 and I was released from the hospital in 2006. I was VERY fortunate that I lived in Boston at the tyime and was in the top medical facilities in the country. I am also lucky that my insurance company covered every single cent of my long illness. You can read about my circumstances on my blog, though It is chronilogical and I've only gotten as far as the coma that comes at the onset.

I too have failed to thrive. I've learned that the text bpooks and research done that express a percentage who DO return to "normal" life are drastically skewed if not blatant lies. My own research found that 37% of those afflicted are rendered permanently disabled.. I used to be a full time, VERY succesful musician. Now I am completely disabled and spend most of my time unable to rise from bed.

I'm not certain what state or city you're in, nor how much energy you have to fight. I would begin by contacting your state insurance commision. Explain that GBS is so rare that on the insurance pull down menu it isn;t even listed\; they must select "neuro-muscular- other". If necessary, obtain a lawyer, perhaps you can get one who will work on contingency. This has the potential to be a high profile media case.

At the same time, we all have a speciic contract with our insurance company and those people will let you die rather than cut you any slack. After five years of hoping to recover and OT recpovering, I spent all of my savings, sold my Manhattan home, put my daughters through college (my wife of 22 years filed for divorce while I was in the coma) and then went on proffesional pension dissability ($1200 a month) where my boston expenses were $6000 a month. I had to leave Boston and have moved to my family farm i9n New York state. My Blue4 Cross of Massachusetts does not cover me in New York. And trust me- they refused to cover me. They contionued to collect the pre miums, but the contract very s[pecifically states that they will noty dcover me in New York State.

So I had to switch to Medicare and only then because i was dec;lared disabled in 2009. Thaty decision is difficult to make because everyone said it would take two years. After four years I accepted that the career that had been VERY hard to come by was now in the past. So my siuggestion tyo you is to have yourself declared disabled as ast as possible because tyhis is something that can be reversed and the only thing more pathetic than someone who has been ravaged by GBS is someon who has been ravaged by GBS and is poor. If you are lucky and manage to recover , then go back to work, but waiting as I did cost me hundreds of thousands of dollars.

Then scrutinize the contract between you and your Health insurance carefully.

Lord, if thjere is anything more I can do, please conall upon me.

Dave

11

Dave and Mari glad for some new found friends and hope to stay in touch.

12

Thank you Sunny.



Sunny said:

Dave and Mari glad for some new found friends and hope to stay in touch.

13

Sunny, it's wonderul to have your kindness. I hope that indeed we have new friends. I must still learn how to navigate this web site. I don;t know about you guys, but when I collapse into bed I am asleep- more than asleep- for a long time- once as long as 17 days waking only for the urinal. So it will take me a long time to learn it. When you're awake for so little time, the pressing business of life always take precidence.

14

Mari-

Your story is so very horrific. I have said so many times that i am lucky. I am lucky tyo be a white male in America. i am luclky that they diagnosed me within 9 days, just before I died. I am lucky that my mother has taken me in and I am lucky that, despite the poor dexyterity and many typos, I am still able to write.

The thought of being in a nursing home for those many many months where every day I was taken to physical therapy, occupational therapy or simply placed in an electric wheelchair to allow me to navigate around the building makes me weep. I was at Boston;s Spaulding Hospital and Rehabilitation Center. I was so damned lucky, and of all the crying and anger at what I have lost, I remember being placed into a "therapy car" on the 8th floor to practice driving. I remember the OT taking me to the "therapy apartment": so that I could make dinner for the two of us, making the bed, opening curtains and shades, manipulating the thermostat. I took all of that for grantyed when I consider you lying, unattended in a bed.

It's clear to me that the people who have been caring for you have NOT bothered to research this illness. If I was able, through the internet and books, to learn what I have about the illness it seems unspeakable that the people provieding you with care couldn;pt do the same thing.

Absolutely unspeakable.

Now I've run into a variety of medical people; I resent having to tell a doctor how to pronounce this syndrome, but twhen I have to explain to a medical professional what occurs it becomes ludicrous. Yet, I've ha doctors who gladly accepted and REASD books for me. Despite that and despite the people who have cared for me, I suspect that perhaps you are the only one who understands what it feels like "in here." How different parts of the body have different types of pain. How you can pin-point a spot where an axon was over taxed while the myelin sheath was still healing and permanent damage was done to the muscle. You likely understand how it is that within a raction of a second, your body tells you that you;ve had enough; how the expenditure of energy is so completely depleteing. Even the people who have sat by my side (my daughter and then my mother) don;t understand it completely. Making my doctors understand is just impossible.

this is why I am writing a book. Sue Baier's "Bed Number Ten" is the one thast most nursing students are required to read. I find the book to dwell entirely too much on blame and it doesn;t go into the very important years that come after.

Writing your story may well be a critical part of your healing. It certtainly can;t hurt. My journaling is very therapuctic.

I do know that I too experienced maltreatment because to the staff of these facilties we were nothing more than blobs of flesh, incapable of speech who had to blink once for yes and twice for no. Once I was able to speak, I was able to charm them all.

But I also am certain that you;re far closer to the epicenter of the storm than I. Where are you now? Are you familiar with the GBS/CIDP Foundation? Your region may well have a GBS representative who might be able to provide help in regard to making people aware.

God knows I am more than willing to write letters or speak with anyone you;d lke. Because i lost my career as a musician due to the GBA, I have switched to writing (yes, I require many drafts and an editor) but I'm fairly good at getting oideas through to people on paper.

I'm fading very very fast. So I must sign off now. but I am here for you. You are NOT alone and the severity of your case, your failure to heal and thrive- the exact same thing has occured to me. Use your muscles but gently.

Dave