Need some sugarless advice about 20 weeks into GBS
AnonymousNovember 8, 2008 at 6:43 pm
My sister in Fla has been in The Fla. Hospital Orlando & Specialty Care Hospital for the first 65 days, and now in a nursing/rehab facility. Total time incapacitated has been 19 weeks, going into week 20 now.
She has NOT shown any improvement in the affected areas, from her neck to her arms down to her fingers. The only area not affected has been her legs for some reason.
We, my brother and her husband, have been doing passive therapy on all her joints on a daily basis. The staff also does PT.
My brother tells me that she has NOT shown any improvement since I was down there in Aug. In fact, he says her fingers appear to be stiffing up. When they try to do PT, her fingers do not bend as easily or as far as they use too. She had to have a pacemaker installed about 6 weeks ago because her heart muscles were sporadic also.
She had to be put back in the Hospital about 4 weeks ago because of pneumonia.
She is still on the feeding tube, cath, and respiratory machine.
Her Husband wants to take her home in Dec and is learning/training for handling all the machines required for support. I intend to go back down and help for several weeks.
I just think, gut feeling, that the signs for any recovery are extremely small.
My own physician says that there are some people who never get through this, after I told him about her condition.
I just want to know the truth, without sugarcoating, about what is really happening to her. I don’t want her to just lay there and have the life just slowly drain away. She has been waiting for the recovery that we all told her was extremely slow. Now I just don’t think it’s going to happen.
Any input? Without sugar please.
Bill in Niantic
AnonymousNovember 8, 2008 at 7:01 pm
Hi Bill. When she was in the hospital what was she told she had??? What did they treat her with. There is recovery from GBS. yes it is slow. One thing I have found out. Over 60% of the neuroligist do not know how to diagnose GBS. One thing is you need to take control of your moms treatment and demand that the doctors prove to you they know what GBS is.
AnonymousNovember 8, 2008 at 7:19 pm
She was diagnosed with GBS using the Lumbar puncture back in June. She has been laid up ever since. The first 30 days she was in ICU at Fla. Hosp Orlando. She was being treated prior to this with neuropathy in her legs for about six months. This area has not lost muscle control, she just had painful legs.
Then in June she lost ALL control in her left arm one night, then the next night her other arm went. She went into the Hospital and after 3 days she had to be put on the Respirator
She has NOT had ANY improvement anywhere that was affected.
November 8, 2008 at 9:26 pm
Just wanted to let you know, usually the responses are plentiful, but most of us are at the symposium in Illinois. I can tell you some things as our first dx was gbs, our second cidp. I have had more time to research cidp. But, I can give you basic gbs info until the cavalry gets back. Un-sugarcoated. Yes gbs is slow. Some recover in weeks or months, some years and I am sure you have read there is a morbidity factor. I would say age is on her side. About the fingers, perhaps you could ask that she have splints on to keep the fingers and hands straight. About pt, too much is not good. At the symposium one of the docs used a phrase, pain, no brain as opposed to no pain no gain. That is not to say she should not have pt with in reason. Can she communicate for short periods of time w/out the respirator? Perhaps you could develop a system if not. Ask if she is in pain or it is too much and develop a que for communication. For those w/gbs that have responded previously they always say they liked to be spolen too, maybe bring pictures, things from home, reassurance. PT is not beneficial if it is overdone because it over works the existing muscles. The brain does not get the message to the muscles because the nerves do not receive the signal, so the muscles that do still work pick up the slack so to speak. now they are doing their job plus the other areas that are not functioning, or I should say trying to do the job. That is how fatigue sets in. It really does stand for getting better slowly. I am sure the respiratory people are coming in and doing therapy, but check to be sure, that would help with the respirator. Is it possible to get her a bit upright? That would help as well.
Did she recieve pp or ivig? Make sure they do not give her the flu or pneumonia shot while in the hospital. Live vaccines are a no no. The most important thing to remember, is there are probably no to people alike in their recovery. Everyone is different in the process and there is no real time table. For instance, typically legs go first, you just can never tell how this disease will hit someone.
Have the docs mentioned if there was any axon damage that was apparent from a ncv/emg study? That info could give you more of an indication as to the prognosis for certain areas. On a bright note, I think the fact that her legs have not been affected will be in her favor. Ask questions, watch to make sure she is turned often, all the things we take for granted in a care situation that may in fact not be getting done. Good luck and be patient with her progress and be sure to check back, especially by Tuesday as most will be back and settled in. Those will be responses with more info.
Dawn Kevies mom
AnonymousNovember 8, 2008 at 9:42 pm
i had GBS two years ago. Numb from my chin down, walking with cane or forearm crutches. working and driving some. spent a year in rehab. first at a hospital then a rehab center. her legs not being affected seems like good news. I know of another person that her upper body was more affected. I have permanent damage to my legs seems what i have is all that will recover.Be sure to take care of her mental health as well as her physical. It is hard being trapped in a body that wont cooperate. I see a therapist every couple of weeks. Be patient and understanding dont let her see your frustration. It will be hard for everyone but you can get thru it.
AnonymousNovember 9, 2008 at 11:08 pm
Hi Bill, No sugarcoating here. Has your sister been treated with either plasma exchange or Ivig? Without treatment it could cause more damage to the nerves. Treatment is very important. 70% have good results with pp and 70% have good results with ivig. It sounds like she may need more passive movement then what she is getting. Does she have splints on at other times? If she had quite a length of time between the first nerve problems and the paralysis/weakness then it is pretty safe to say she has cidp. GBS is an acute onset vs cidp with a lengthy onset. It is really important that your sister is treated by a dr who has alot of cidp/gbs experience. Her future depends on it. Please stay positive, never give up hope. Did you sign up for the information packets from the foundation? That would be a good starting place to help inform the drs. Please keep in touch and ask all the questions you have. Your Sister and Your Family are in My Thoughts and Prayers. Take Care.
AnonymousNovember 10, 2008 at 10:57 am
I’ll echo that the previous replies are great ones.
Plasma Exchange/IVIg are the two methods of treatment currently used.
I don’t have much knowledge about CIDP – but there are many here who I rely on for great info, and no – the replies I’ve received to my posts have been pretty to the point, and well received.
take care and be safe.
AnonymousNovember 10, 2008 at 5:00 pm
My knowledge of the disease is that it can progress for some time, but that there is usually a limit….GBS possibly 4 weeks? CIDP – I’m not sure?
I don’t want to insult with silly questions, but is Neuro involved with current problems? Is there a prognosis?
Hang in there, I’ll talk to you later.
AnonymousNovember 11, 2008 at 9:30 am
Bill, you might try to get her more treatments, it is out of her system and it could limit the damage that is being done-ie the hands. In my opinion, pp then followed by ivig is needed. Is she in any pain? If she is she needs to get that under control, with non narcotic meds-narcotics can have an effect on her breathing muscles, which is not good. Prayers are continued.
Another indication that she might have cidp vs gbs is the way paralysis ascended. You mentioned her legs had problems first then awhile later her one arm then the next day her other arm-gbs ascends symmetrically, while cidp can ascend asymetrically. Both can have protein levels in the csf, as well as having normal levels.
AnonymousNovember 11, 2008 at 8:58 pm
Hi Bill: I had GBS almost four years ago and made rapid recovery for 6 months but then my recovery stalled. My nerves do not seem to be healing and may never heal. Nerve damage is hard to predict. But I know someone who was completely paralyzed for 4 years and then began healing and now walks without any assistance. The truth is that no one on this site and no doctor can tell for sure what recovery will look like. The factors that make some difference are age at onset, rapidity and severity of paralysis, being on a vent or not. But really 20 weeks is way too early to give up hope. You have to think in terms of a year or two before you may really know. I hope things improve soon. Jeff
AnonymousNovember 12, 2008 at 4:44 am
Hi Bill ~ tell your sis not to give up (and the rest of you, too!). I never got any treatment for GBS because it wasn’t known what to do back when. But, for the next 10 years, I continued to improve. Somethings were very small and others where big, which family and friends could identify. Keep believing and I’ll keep praying for all of you. Many hugs sent to your sister. Please let her know that this GBS/CIDP family is remembering her 🙂
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