New to Forum – Need advice
AnonymousAugust 8, 2007 at 8:56 pm
My husband of 2 years was diagnosed with GBS on a trip in Algeria. His initial “treatments” were received in Algiers, Algeria. No plasma exchange, no IVIG, nothing but heparin! When he describes the early months it takes everything in me to hold back the tears. What a horrendous illness.
He had tremondous pain all over, paralyzed all over, on a ventilator for 25 days, no pain medication, no treatment, just surveillance. Doctors said not much they can do but wait it out.
He came home in May. I just found you all!
His neuro doesn’t do much. He had an IMG test and takes Neurotin. No advice or support from the doctor. Rehab center has never dealt with GBS patients either.
This annoys him. He wants to talk to people who know GBS.
He has improved significantly, but tired and frustrated with GBS!
He is still in a wheelchair. His leg muscles are extremely weak. In Algeria he had no weight bearing exercises. His PT gave him a walker to practice. He feet and ankes still have no movement. He looses his balance and can bnarely stand on his own. He still has burning on bottom anf upper legs. He is constipated a lot and burning during urination. Saw urol and gave him meds.
He has pain attacks on his bottom and upper legs almost everynight. Needless to say he hardly sleeps at night.
His hands are stiff. He cannot bend his fingers well much less make a fist. He just had surgery on the left hand to release the tightness.
I don’t know. It’s the worst thing that has happened to us. He’s scared he will not ever be able to walk or use his hands again. He’s tired of the pain and lack of sleep.
He’s a young 32 yr old active man. He can’t even look at pictures of how he was before GBS.
It helps to hear your experiences and find others who know what is happening. We have not had much support in Houston. Meet the local chapter of GBS.
Any advice, words of encouragement, support will be deeply appreciated.
God bless you all with GBS and those who care and help you!
Kristi and Nourdine:)
AnonymousAugust 8, 2007 at 9:23 pm
Welcome Kristi and Nourdine. I am glad you found this forum and have shared your story with us. I am sorry that you did not have an easy time. GBS is a nasty illness and Doctors don’t know much about it and with that said it is even harder because each case and their response is so different but similar. It sounds like you have recovered extremely well without the best of help. It has alot to do with your will to live and possitive attitude. You have to fight and help your body fight this illness and you were sucessful. You might of already read that GBS also stands for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly. You have come a really long way in your recovery and have to remember not to give up! I am still having residuals and dealing with them and gaining ground now. To conquer more independence ask for more OT (Occupational Therapy) and PT (Physical Therapy). Water is a good place to start and just use the water motion to gain strenght and balance and stamina without the fear of falling. Floatation devices can be used also if you are not able to swim or keep your head above the water. Heated water is best, but not a hot tub. Where I go the main aerobic pool is 84 degrees, the rehab pool is 94 and the hot tub is 104. I work out in the rehab pool the most to avoid chills. If I am really moving quickly with a class, I am able to go into the bigger pool for walking and more movement. I have learned that many tiny muscles support us when we walk. Just not the back and abs and leg muscles. You have to be able to work or get all those tiny muscles strong as a machine to get the whole body moving. There are exercises that he can do in bed or in a chair also. Those are the ones I started with before I could walk! Don’t give up it takes time! Your body needs lots of rest to get the nerves to heal. Right now they are not able to talk to the muscles. The muscles need movement to bring back their memory. The muscles eat up energy…..the damaged nerves are leaking that precious energy. So take it slowly! We are here for your support! We have been there and done that! All of us are at different stages in our recovery also! Glad you decided to join the group! 🙂
AnonymousAugust 8, 2007 at 9:40 pm
hi kristi and nourdine & welcome,
heparin is a blood thinner, worthless for gbs. how much neurontin is he taking? is he making even the slightest improvement? any pt/ot/exercise must be recovered from in 12 to 18 hours or it is too much & will hamper gbs recovery. where do you live? more when i get the answers to these ques. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 8, 2007 at 11:34 pm
Welcome to the forums! It must have been very scary to be in another country and be so sick. It sounds as though he is doing rather well considering he didn’t get any IVIG or plasma pheresis. It is sometimes very frustrating when you and your Dr. aren’t on the “same page”. Next time Nourdine goes in for an appt., take a list of questions with your specific concerns and have the Dr. address all of them. If you don’t feel comfortable with his answers or his plan of care, then it may be time to get a new Dr. GBS recovery is a slow process, full of lots of peaks and valleys. A good neurologist who is familiar with GBS, and can listen to his concerns, will make the process a little easier. Let us know how he is doing! I’ll keep you in my prayers.
AnonymousAugust 9, 2007 at 12:10 am
I would first off like to welcome you to this forum. The people here are great & all together have a wealth of information about GBS. First off, your husband needs to get his pain under control; it also sounds like he might need a new neurologist, one who is more understanding? He should probably be on a higher dose of neurontin than he is (at least 3600 mg a day or more), or try Lyrica for nerve pain. He should also be on something like Vicadin (Lortab) for his other pain. The idea here is so that he can get more rest, as that is when the body does most of its healing.
Having said that, I can’t begin to stress how important it is to rest, as he probably still has major fatigue. This is just part of the illness, probably caused by his body having to work so hard to do anything at all (using damaged nerves.) He is still early in his recovery, remember that the first two-three years are the most important for recovery & rehab. Remember that 80%of GBS patients make almost a full recovery. Keep us up-to-date & post often.
AnonymousAugust 9, 2007 at 3:32 am
Welcome to the forums,(unfortunately, under the circumstances ), and Pam, Kit, Gene and Mirandee have just about covered most of your concerns and issues………………………yes, he needs more Neuronton. And, as Pam has suggested….Vicodin for all the other pains, for sure!! I might add Ambien as a sleep aide…………….it will definitely help with the sleeping problems. Consult with your Dr./Neurologist inre. to these prescribed meds. Most of us GBS’ers take some, or all of these (and more, is some cases). Take care and God bless……………….it WILL get better for him. Just so sad that he had to endure the initial stages as he did….I can’t imagine going through that without pain meds, neurontin,etc. Like Gene said, Heparin is ok for thinning the blood, but, that was it???? That is all he got while he was hospitilized with GBS?? Oh, My. This is your best bet…here on the GBS forums. Glad you found us 🙂
AnonymousAugust 9, 2007 at 9:37 am
Welcome to your new family where we understand because we feel what you feel. If you only joined the discussion boards, please go to the main page and register for the GBS CIDP Foundation as well. You can find them at gbs-cidp.org
They will send you helpful information. If you will let us know where you live, nearest big city, some of us will do a search and try to help you find a neurologist who has excellent knowledge of GBS. We may even be able to find a member who lives near you. Your husband does need to have his pain meds increased until he finds the level that helps.
We’re here for you to talk to,
AnonymousAugust 9, 2007 at 12:40 pm
Hi Kristi and Nourdine, Welcome to The Family. Please find a good neuro, one with gbs/cidp knowledge, it will give you both a relief from all the stress. I agree with everyone else, Pain management is of utmost importance. Neurontin, Lyrica, or antidepressants work for that. Narcotics aren’t good for nerve pain. Please find a therapists who is knowledgeable about gbs/cidp, you need the best, one who doesn’t know will hurt you. Pain is not good when exercising, little is good, short periods of work with alot of rest in between is best. Don’t rush things, recovery takes time. As for the hands, use sponges, stacked on each other and tied in the middle, to place under his hands(palms) to help get the movement back. squeeze the sponges, 5 times every 30 mins, increase times when able to. This is something that you might need to help each other with, until he is able to control his fingers himself. You can use playdoh, blown up medical gloves, or ballons to accomplish the same affect. and everything is portable, and can be used as support for the hands and wrists. Surgeries should be the very last option, it can cause more problems if not done by a gbs/cidp knowledgeable dr. I found aqua therapy to work well for me, even 2 years after the initial paralysis. Especially if he is weak, land exercises aren’t going to give him the work out they are meant for, aqua therapy will get him to the point where he will be able to do land based therapies correctly.
I was treated in the same fashion as Nourdine, after my initial paralysis event. I received hep shots in my stomach for 2 weeks, twice a day. During my first event I had no pain, Thankfully, and I wasn’t given any treatments at all except I had great pt/ot to help me through it. As was said before, write down all your questions, you might want to ask them to us and take our responses with you to the dr. that way you can tell right away if you need to find a new dr or not. if your questions are answered close to what is the consensous with us, then you know the dr is thinking outside the box, if the answers are way off or blown off, then start looking. Gene keeps a list of drs, he will post them for Nourdine. Are You in the Houston area? What dose of neurontin is Nourdine taking presently? Gene has the numbers for that also(Gene is The Man!):)
Stay positive, it will get Nourdine farther in his recovery, never give up and ask questions or vent here whenever you 2 need to. Take Care.
AnonymousAugust 10, 2007 at 11:23 am
It really does make a difference to talk to others about this! Thank you for your kind words and advice. It’s sad, but I feel that I can only trust the advice of those who have experienced GBS. I appreciate your replies.
Is this where I respond to your posts?
Gene, I am in Houston, northern suburb, if you have any doctors on your list.
I am only taking 300mg of Neurotin at bedtime. The first time the doctor said take 2-300mg capsules at night. That made me nausous, so I took only 1-300mg pill.
Last night I took the 600mg. No nausea No difference in pain either. It sounds like I should ask the doctor to increase that 10 times!!
I am sleepy, but once I go to bed, I cannot find a comfortable position. If I stay on my left side, it starts to burn. I move to the right. It burns. I lay on my back. Burn. Stomach burn.
My other question is for my legs. I can only control the tiniest bit from my knee to my toes. The rest of my body seems to have come back after the paralysis, but from the knee down I don’t have much progress. This worries me. Of course, the rest are not at all like before, but at least I see the progress. I can’t even move my toes. Does this sound familiar to anyone?
How does recovery work? Doctor says the legs are the last part to recover. The nerve grows an inch or so a month. Is this your experience?
AnonymousAugust 10, 2007 at 3:11 pm
Gene will probably reply and he’ll probably have more Dr.’s names for you, but these are two names I got from another GBS/CIDP site that has a doctor referral so they do have a knowledge of GBS. Have you tried seeing either of these neurologists? Yadollah Harati at Baylor College of Medicine in Houston and Aziz Shaibani at Nerve and Muscle Center of Texas, located in Houston.
I have another syndrome CIDP, so I can’t help too much with GBS, but I can really relate to the stomach burn and sleepless nights, which is usually caused by medications we need to take. If you need the medication, then this is something we must endure. My stomach burn ended when I was able to come off of prednisone. If you are trying to take anti-acids to ease the stomach burn, BE CAREFUL with them. I was taking TOO many and ended up in hospital with bleeding ulcers. Maybe an ulcer medication, rather then over-the-counter anti-acids will help. Try asking your doctor. Even though my stomach burn is gone, I still can’t get a good nights sleep because of the numbness I have and the way my legs feel.
AnonymousAugust 10, 2007 at 10:54 pm
sounds like you’ve been reading up on neurontin here. 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. in your case it seems to have initially made you sick. like you said, take this info to your doc & ask for dramatic increase. amitriptiline is a supplement you can take at bedtime. it can help gbs pain/burn & is a super sleeping pill. yes, the feet & legs usually are the last to heal. no one knows how long nor to what degree any one gbser will recover. but gbs recovery is high. time is required measured in months & years. gbs stands for Get Better Slowly. below is all i have for TX. take care. be well.
TX Mike Yuan, MD. Neurology & Pain Management Bellaire Clinic, 9110 Bellaire
Boulevard, Suite H, Houston, TX 77036, Phone: 713-490-1493
4703 Brookview Drive, Sugar Land, TX 77479-3073
Dallas: one of the world’s most renounded GBS Immunologists, Richard Wasserman, M.D. Fax: 972-566-8837
Dr. Pinky Tiwari. her office is in St Luke’s Medical Towers. She has privileges at the hospital.
John D. Rossi 920 Medical Plaza Dr. Suite 470 The Woodlands [north houston, near bush int’l airport], TX 77380
Houston’s Medical Center named Dr. Steven B. Inbody. He is a board certified neurologist who specializes in CIDP.
his website at: [url]www.neurologybulletin.com[/url]
Abilene – Dr. Paul Harris. He is the only one I found that has any knowledge/experince with GBS in Abilene.
suburban hospital (West Houston Hospital, Dr. Gaer NOT recommended) by someone here.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 11, 2007 at 2:08 am
I am sorry, but did I miss something? Why aren’t you in PT and OT?? This is what enabled me to walk, feed myself, brush hair and teeth, and all the things that people take for granted. It was the best treatment I think I could have during recovery. I mean, I think you need to be into professional supervised therapies…..am I wrong guys/gals??
AnonymousAugust 11, 2007 at 7:38 am
UR right. be it professional ot/pt or do-it-yourself, you need to reactivate the tasks you need to do. we must also remember that any activity must be recovered from in 12 to 18 hours or it is too much & will retard improvement. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 11, 2007 at 12:16 pm
I don’t have any advice except to be as loving and supportive as you can be and also to make sure you yourself get enough rest and help so you don’t get sick too. My husband John was a healthy active farmer who had just had his 60th. birthday. On June 4, 2006, we were outdoors building a duck pen when he began to lose his ability to swallow and his speech became garbled at about 10 a.m. By three a.m. that night, he had been diagnosed with GB and they were making a hole in his throat to insert a tube so he could be on a breathing machine. He was paralyzed from the top of his head to the tips of his toes for ten months. He couldn’t even close his eyes or mouth. We communicated by my saying the alphabet and his rolling his eyes for yes or no for about ten months. A year and two months later he is still very paralyzed and on total life support – vent, stomach feeding tube, etc. He has gained back enough movement in his head and neck that he can now run a wheelchair and a computer mouse with head movements. At ten months his voice returned and he could speak to me with a speaking valve on his vent tube. At one year and two weeks after onset, his ability to breathe returned enough that they are now trying to wean him off the vent. He can go 13 hours without it some days. He has gained small amounts of shoulder, arm and leg muscle use. I don’t know if he will ever recover and come home. I work full time, take care of our farm in the evenings and early mornings, and spend my two weekend days off at the rehab hospital 50 miles away with my husband. We can now talk to each other every day because of a cell phone and a blue tooth device. I have come to absolutely hate and despise doctors. I haven’t seen any kindness or compassion or willingness to share information from any of them. When my husband has been nearly neglected to death a few times by incompetent or negligent hospital personel, the doctors make excueses for them. If there is such a thing as a doctor who knows anything about this disease or gives a s—, I haven’t seen any evidence of it. I don’t have other family. I have found that many wonderful friends have helped us and even people I thought were just acquaintances have proved to be true, generous friends. Many of the lower people on the hospital staff (the everyday care givers) have shown extreme kindness and caring. I have met lots of people who have had GB to a lesser degree and recovered to the point where you couldn’t tell by looking at them or meeting that that there was anything still wrong. On the other hand, I met a young man 28 years old who has had this horror for four years to the same extent as my husband and has only recovered the use of one finger. He still can’t talk or breathe. I read about someone who got this and was in bed after that for 25 years until he died. I have read about others who recovered over a period of three years. If you ever want to talk to me, my e-mail address is [email]email@example.com[/email]. I haven’t been able to find a support group, and I don’t find this forum easy to use. We have used up a one million dollar ceiling insurance policy, and all we had saved for retirement and now are seeking medicaid help from the State. There have been lots of times during all this that I have wished that I didn’t have to keep on going and could just jump off the edge of the world.
AnonymousAugust 11, 2007 at 3:15 pm
I think all of us have experienced the sleepless nights due to one thing or another. The first places that you experienced residuals like the hands and feet are the last places to heal. Mostly because they are at the end of the longest nerves in your body. I still feel like I am wearing tight rubber gloves all the time and sometimes my hands feel like they are burning from heat and sometimes they fell like they feel like they are burning from cold or frost bite. My feet feel like I am wearing tight socks and sometimes they itch/burn. As you continue to heal the changes in the sensations are amazing that they can change over night. Some have never come back and some return more often than others. I know when I have over done it the numbness travels up my leg toward the knee or to the elbow. Now I think of those as bad days when I am stiff and hurting. I know I have usually over done it. I rest for a few days and I have good days where the tingling is only in the tips of my fingers and out in my toes. I flop back and forth all night to get comfortable. If it is too bad I could take meds for it. Take care of yourself and you will learn what helps you relax. I probably hate the swelling the most of any of my residuals. Stiffness and shoes or clothes that don’t fit right. Keep a journal you might even see a pattern….swelling can be greater when there is a full moon or when you exercise too much or have too much salt in your diet. You will get it figured out!
AnonymousAugust 12, 2007 at 10:17 pm
Thanks Gene for the info on te meds and drs!:D
I think for the first time in a year I actually slept for 4/5 hours straight!!!!!!!
I am going to PTand OT 3x a week.
Does anyone know if there are any services available for GBSers? My wife is doing everything and I don’t know if there are organizations that can help her. She tries her best, but I know it’s hard. She is the only one working now, she cooks, cleans, shops, works, taxis me around to all my appontments, etc. When I look online for disability/handicap services all I find is SS. Financial assistance would be great since we have only one salary now and an increase in medical bills, but also I am looking for social acivities for the handicapped, house visits, transportation, etc. It would be nice to leave the house and change air a bit too.:)
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