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Recovery from GBS
Hi,
My mother (60 Yrs) had mild fever (101 degree Farenite) after which she started feeling week in the legs and hands and lost her grip, we took her to the hospital where she was diagnosed with having AIDP better known as GBS. After two days of keeping her under observation the doctor started a dose of IVIG of 2gm per kg of body wieght which was given over a 5 Day period.
During her stay in the hospital she deterioated and could not lift her hands and legs and had severe pain in the whole body. All through the stay they did the regular tests like NCV and spinal tap. The doctor said since we have started IVIG in the initial stage of the disease it will not progress any further and thankfully it did not, her ability to speak or eat or breath were not affected.
She was admitted on 1st of May 2010 and released on 8th of May 2010 after the 5 Day dose of IVIG and some physiotherapy. We were told to continue physiotherapy at home and give her medication as prescribed by the doctor. After two weeks of physiotherapy she is able to walk slowly with support (needs more confidence to walk alone) and can move her hands and change sides on the bed. She still has some weeknes in the shoulders though. The physiotherapist says that she is recovering well and can start doing small chores around the house like cutting the fruits and vegetables etc and that she does not need further physiotherapy.
My questions in this regard are as follows:
1. Is it advisable to stop physiotherapy after just 2 weeks of discharge from the hospital as advised by the physiotherapist?
2. She is recovering well but still has a lot of weekness which increases towards the evening and night time and has shaky hands. She has painful and restless nights. Is there anything we can do in this regard and generally how long would it take for this to go away.
3. On searching the net I found forums, blogs, case studies related to the initial stages of the disease and the post recovery stage, I could not find much info on what to expect during recovery, could you please shed some light on this matter.
4. The doctor said that AIDP is a one time thing and it is very rare that it can come back, on searching the net the majority cases that I found were CIDP patients which has me worried if a relapse is more common than what the doctor made us believe. What signs should we be looking for.
5. The symptoms of GBS started after a 2 day period of mild fever (101 degree F), was it in any way related to the medicine we gave for the fever and should we take any speacial precautions going forward if she has fever and is it advisable to give the same medication.
6. After this disease she has started getting increasing gastric problems and attacks, is this in any way related to this disease.
Sorry for such a long question but could not help it, just want to get some questions answered to reduce the anxiety and help her recover from this disease.
Help is much appreciated,
Thanks
This discussion is related to recovery from GBS.
My mother (60 Yrs) had mild fever (101 degree Farenite) after which she started feeling week in the legs and hands and lost her grip, we took her to the hospital where she was diagnosed with having AIDP better known as GBS. After two days of keeping her under observation the doctor started a dose of IVIG of 2gm per kg of body wieght which was given over a 5 Day period.
During her stay in the hospital she deterioated and could not lift her hands and legs and had severe pain in the whole body. All through the stay they did the regular tests like NCV and spinal tap. The doctor said since we have started IVIG in the initial stage of the disease it will not progress any further and thankfully it did not, her ability to speak or eat or breath were not affected.
She was admitted on 1st of May 2010 and released on 8th of May 2010 after the 5 Day dose of IVIG and some physiotherapy. We were told to continue physiotherapy at home and give her medication as prescribed by the doctor. After two weeks of physiotherapy she is able to walk slowly with support (needs more confidence to walk alone) and can move her hands and change sides on the bed. She still has some weeknes in the shoulders though. The physiotherapist says that she is recovering well and can start doing small chores around the house like cutting the fruits and vegetables etc and that she does not need further physiotherapy.
My questions in this regard are as follows:
1. Is it advisable to stop physiotherapy after just 2 weeks of discharge from the hospital as advised by the physiotherapist?
2. She is recovering well but still has a lot of weekness which increases towards the evening and night time and has shaky hands. She has painful and restless nights. Is there anything we can do in this regard and generally how long would it take for this to go away.
3. On searching the net I found forums, blogs, case studies related to the initial stages of the disease and the post recovery stage, I could not find much info on what to expect during recovery, could you please shed some light on this matter.
4. The doctor said that AIDP is a one time thing and it is very rare that it can come back, on searching the net the majority cases that I found were CIDP patients which has me worried if a relapse is more common than what the doctor made us believe. What signs should we be looking for.
5. The symptoms of GBS started after a 2 day period of mild fever (101 degree F), was it in any way related to the medicine we gave for the fever and should we take any speacial precautions going forward if she has fever and is it advisable to give the same medication.
6. After this disease she has started getting increasing gastric problems and attacks, is this in any way related to this disease.
Sorry for such a long question but could not help it, just want to get some questions answered to reduce the anxiety and help her recover from this disease.
Help is much appreciated,
Thanks
This discussion is related to recovery from GBS.
Hey,
Thank you so much for such a detailed reply.
On the recovery front as I mentioned her limbs and hip bone have become stronger and she is now able to walk without help, she has even started taking the stairs slowly and steadily and started a bit of cooking as advised by the physiotherapist to help her exercise the shoulders.
The physio advices that except for the shoulders that are still weak cause she does not use them much the rest is fine now and she should try and get back to her daily routine that will be enough exercise and would help the recovery. He says that he will tell us some exercises (general as well as specially for the shoulders) which we can make her do or she can do on her own and he will come 1-2 times in a week now so that she does not become dependent on him and starts doing things without being told.
He has also advised her to play catch standing with someone so that it improves her shoulder and arm streangth as well as her coordination.
The antacids have reduced the gas problem very much but still some problem at night remains. Her diet is lite and not at all spicy. She is even having a medication just to prevent the building up of gas.
Her case was also minor (Thank God for that!!!) and she is imrpoving every day and I try to make her stay positive and upbeat.
I hope and pray that you are fully recovered and in good health now. Thank you so much for all this info.
Thank you so much for such a detailed reply.
On the recovery front as I mentioned her limbs and hip bone have become stronger and she is now able to walk without help, she has even started taking the stairs slowly and steadily and started a bit of cooking as advised by the physiotherapist to help her exercise the shoulders.
The physio advices that except for the shoulders that are still weak cause she does not use them much the rest is fine now and she should try and get back to her daily routine that will be enough exercise and would help the recovery. He says that he will tell us some exercises (general as well as specially for the shoulders) which we can make her do or she can do on her own and he will come 1-2 times in a week now so that she does not become dependent on him and starts doing things without being told.
He has also advised her to play catch standing with someone so that it improves her shoulder and arm streangth as well as her coordination.
The antacids have reduced the gas problem very much but still some problem at night remains. Her diet is lite and not at all spicy. She is even having a medication just to prevent the building up of gas.
Her case was also minor (Thank God for that!!!) and she is imrpoving every day and I try to make her stay positive and upbeat.
I hope and pray that you are fully recovered and in good health now. Thank you so much for all this info.
1. Is it advisable to stop physiotherapy after just 2 weeks of discharge from the hospital as advised by the physiotherapist?
No. Therapy should be continued until/unless the patient is fully recovered or able to continue on their own. Therapy is very important now to assure as full a recovery as possible.
2. She is recovering well but still has a lot of weekness which increases towards the evening and night time and has shaky hands. She has painful and restless nights. Is there anything we can do in this regard and generally how long would it take for this to go away.
Fatigue is a big factor for all AIDP and CIDP patients. As the day goes on fatigue usually grows and when it gets bad enough many times a patient can experience neuralgia. This should subside as she regains her strength and her nerves are repaired. For some people this never goes away despite their not having the chronic form of the IDP.
Generally drugs like Lyrica and Gabapentin are given to treat the pain associated with neuralgia.
3. On searching the net I found forums, blogs, case studies related to the initial stages of the disease and the post recovery stage, I could not find much info on what to expect during recovery, could you please shed some light on this matter.
You likely won't find two recovery stories that are identical. Age, severity of the initial illness and a host of other things determine how long it takes to recover. I was out of the hospital after GBS after about a week. I was 18 at the time. It took about 9 months to regain 90-95% of my prior physical abilities. I never felt the same again though. I also was a minor case. Many people end up unable to walk or even on ventilators with the initial onset and spend years coming back.
4. The doctor said that AIDP is a one time thing and it is very rare that it can come back, on searching the net the majority cases that I found were CIDP patients which has me worried if a relapse is more common than what the doctor made us believe. What signs should we be looking for.
Most cases of GBS are one time things. CIDP is the chronic reoccurring form of the illness. If you do some research you can easily see how rare both CIDP and AIDP are. If your mother has GBS the odds are very low she will develop CIDP. But you are correct in that there is no way to know whether or not this is the onset of CIDP. You should continue with therapy and plenty of stress free rest. Your mother should continue to get stronger as time goes on. If she doesn't improve or gets worse you should see a neurologist immediately. Your mother may have had an EMG/NCV while in the hospital. This is a good way to measure the nerve damage that has occurred. These tests can be done again later on to compare nerve function and see if there is a deterioration. The best advice I can give you is to monitor where she is now physically and take note if anything begins to get worse.
I had GBS in 1991. I was later diagnose with CIDP 14 years later. I am a rare case since I had no problems at all between those points in time.
5. The symptoms of GBS started after a 2 day period of mild fever (101 degree F), was it in any way related to the medicine we gave for the fever and should we take any speacial precautions going forward if she has fever and is it advisable to give the same medication.
AIDP/CIDP are usually brought on by the immune system attacking the myelin sheath that covers nerves after a viral infection. There are some cases where toxic chemicals are believed to have initiated the illness. Many people with these illnesses got them as a result of reactions vaccines. In my case I had a sinus infection that brought it on. I highly doubt the medication administered was at fault. Her future fevers should be treated normally and shouldn't pose any danger. These illnesses are auto-immune disorders. The body can't differentiate between the proteins in foreign infectious cells and the proteins in the material that covers your nerves. The immune cells attack the nerve lining and it stops being able to effectively transmit the electrical signals from your brain to the muscle. The result is paralysis, sensory nerve function loss and or weakness. Myelin can be regrown but depending on how bad the damage is you won't be able to know ahead of time whether or not it will grow back well enough to allow for optimal electrical signal transmission. The process of regenerating nerves is called reinnervation. Sometimes there is axonal damage and when the body repairs the nerves it can be like putting electrical tape on a frayed lamp wire - some inner wire can be exposed and the lamp can short out. Basically the nerve can regrow and not work correctly because of signal loss.
6. After this disease she has started getting increasing gastric problems and attacks, is this in any way related to this disease.
That's probably related to medications, diet or stress. Check for spicy/disagreeable foods, drug labels that indicate stomach irritation as a side effect and high stress. If you can't nail it down with that and over the counter antacid products don't work then she should see a gastroenterologist.
No. Therapy should be continued until/unless the patient is fully recovered or able to continue on their own. Therapy is very important now to assure as full a recovery as possible.
2. She is recovering well but still has a lot of weekness which increases towards the evening and night time and has shaky hands. She has painful and restless nights. Is there anything we can do in this regard and generally how long would it take for this to go away.
Fatigue is a big factor for all AIDP and CIDP patients. As the day goes on fatigue usually grows and when it gets bad enough many times a patient can experience neuralgia. This should subside as she regains her strength and her nerves are repaired. For some people this never goes away despite their not having the chronic form of the IDP.
Generally drugs like Lyrica and Gabapentin are given to treat the pain associated with neuralgia.
3. On searching the net I found forums, blogs, case studies related to the initial stages of the disease and the post recovery stage, I could not find much info on what to expect during recovery, could you please shed some light on this matter.
You likely won't find two recovery stories that are identical. Age, severity of the initial illness and a host of other things determine how long it takes to recover. I was out of the hospital after GBS after about a week. I was 18 at the time. It took about 9 months to regain 90-95% of my prior physical abilities. I never felt the same again though. I also was a minor case. Many people end up unable to walk or even on ventilators with the initial onset and spend years coming back.
4. The doctor said that AIDP is a one time thing and it is very rare that it can come back, on searching the net the majority cases that I found were CIDP patients which has me worried if a relapse is more common than what the doctor made us believe. What signs should we be looking for.
Most cases of GBS are one time things. CIDP is the chronic reoccurring form of the illness. If you do some research you can easily see how rare both CIDP and AIDP are. If your mother has GBS the odds are very low she will develop CIDP. But you are correct in that there is no way to know whether or not this is the onset of CIDP. You should continue with therapy and plenty of stress free rest. Your mother should continue to get stronger as time goes on. If she doesn't improve or gets worse you should see a neurologist immediately. Your mother may have had an EMG/NCV while in the hospital. This is a good way to measure the nerve damage that has occurred. These tests can be done again later on to compare nerve function and see if there is a deterioration. The best advice I can give you is to monitor where she is now physically and take note if anything begins to get worse.
I had GBS in 1991. I was later diagnose with CIDP 14 years later. I am a rare case since I had no problems at all between those points in time.
5. The symptoms of GBS started after a 2 day period of mild fever (101 degree F), was it in any way related to the medicine we gave for the fever and should we take any speacial precautions going forward if she has fever and is it advisable to give the same medication.
AIDP/CIDP are usually brought on by the immune system attacking the myelin sheath that covers nerves after a viral infection. There are some cases where toxic chemicals are believed to have initiated the illness. Many people with these illnesses got them as a result of reactions vaccines. In my case I had a sinus infection that brought it on. I highly doubt the medication administered was at fault. Her future fevers should be treated normally and shouldn't pose any danger. These illnesses are auto-immune disorders. The body can't differentiate between the proteins in foreign infectious cells and the proteins in the material that covers your nerves. The immune cells attack the nerve lining and it stops being able to effectively transmit the electrical signals from your brain to the muscle. The result is paralysis, sensory nerve function loss and or weakness. Myelin can be regrown but depending on how bad the damage is you won't be able to know ahead of time whether or not it will grow back well enough to allow for optimal electrical signal transmission. The process of regenerating nerves is called reinnervation. Sometimes there is axonal damage and when the body repairs the nerves it can be like putting electrical tape on a frayed lamp wire - some inner wire can be exposed and the lamp can short out. Basically the nerve can regrow and not work correctly because of signal loss.
6. After this disease she has started getting increasing gastric problems and attacks, is this in any way related to this disease.
That's probably related to medications, diet or stress. Check for spicy/disagreeable foods, drug labels that indicate stomach irritation as a side effect and high stress. If you can't nail it down with that and over the counter antacid products don't work then she should see a gastroenterologist.
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