Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Neurology (Expert Forum)
recovery from GBS
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
recovery from GBS
by Ana Maria Martinez, Nov 23, 2000 12:00AM
First of all I want to thank the organizers,doctors and sponsors that make possible this forum. It is a great help for ill people and their families which try to find some answers.
My father (soon 65 years old)got GBS last April. Although he did not need a ventilator, it is a quite severe case (he was totally paralised in less than two days), and according to the doctors it is an axonal type of GBS.
I had the opportunity to contact you last June and you were very doubtfull about being an axonal type of GB, since it is much rearer. At that time you wondered how the doctors knew about it. The only thing I know is that they made an EMG about 8 days after he got the illness and another 8 days after the first one. According to the doctors the EMG showed damage in the axons. He is still going to the neurologist every second month but they did not take any more tests but just to check the development of the motion.
He is going to physiotherapy every day and still he is not able to walk, but he can move a bit the legs and the arms, not the hands either but just a little bit the fingers. His improvement is very slow, but since April it has been a kind of steady improvement
What do you think about the diagnosis? Was the EMG done in the early stages of the illness? Is the EMG the right test to get such a diagnosis? If it has been a slow improvement so far, do you think he will be able to have an independent life again? Do you have any information about GB Supporting Groups in Spain?
Once more thank you very much for your help and your time.
With the best regards, Ana
My father (soon 65 years old)got GBS last April. Although he did not need a ventilator, it is a quite severe case (he was totally paralised in less than two days), and according to the doctors it is an axonal type of GBS.
I had the opportunity to contact you last June and you were very doubtfull about being an axonal type of GB, since it is much rearer. At that time you wondered how the doctors knew about it. The only thing I know is that they made an EMG about 8 days after he got the illness and another 8 days after the first one. According to the doctors the EMG showed damage in the axons. He is still going to the neurologist every second month but they did not take any more tests but just to check the development of the motion.
He is going to physiotherapy every day and still he is not able to walk, but he can move a bit the legs and the arms, not the hands either but just a little bit the fingers. His improvement is very slow, but since April it has been a kind of steady improvement
What do you think about the diagnosis? Was the EMG done in the early stages of the illness? Is the EMG the right test to get such a diagnosis? If it has been a slow improvement so far, do you think he will be able to have an independent life again? Do you have any information about GB Supporting Groups in Spain?
Once more thank you very much for your help and your time.
With the best regards, Ana
Doctor's Answer
by CCF Neuro[P] MD, RPS, Nov 23, 2000 12:00AM
Dear Ana:
Again, I am sorry that your father's recovery has been extremely slow. The fulminant GBS types with the hyueracute course of your father's is alittle unusual in that there was no mechanical ventillation required. The EMG should have shown markedly reduced or absent CMAP's with distal supramaximal stimulation without conduction delay and absent SNAP's. The subsequent EMG should have shown abundant fibrillation potentials on needle EMG. And as you have already said, a primary axonal degeneration. These are rare cases and unfortunately the recovery is somewhat limited, as the proportion of axons have undergone degeneration and regeneration of axons is at best, not complete even in the normal GBS types. Each case is so independent prognostication is difficult.
The usual GBS testing is the EMG and the CSF showing elevated protein, together with the clinical history and neurological exam. There are some types that have a specific antibody association with it, GM1, that helps in the diagnosis and differentiating it from Lambert-Eaton syndrome (also the EMG would have been distinctively different). So, the diagnosis sounds correct.
Unfortunately, I do not know about the support groups in Spain.
I do hope that your father has a steady recovery.
Sincerely,
CCF Neuro MD
Again, I am sorry that your father's recovery has been extremely slow. The fulminant GBS types with the hyueracute course of your father's is alittle unusual in that there was no mechanical ventillation required. The EMG should have shown markedly reduced or absent CMAP's with distal supramaximal stimulation without conduction delay and absent SNAP's. The subsequent EMG should have shown abundant fibrillation potentials on needle EMG. And as you have already said, a primary axonal degeneration. These are rare cases and unfortunately the recovery is somewhat limited, as the proportion of axons have undergone degeneration and regeneration of axons is at best, not complete even in the normal GBS types. Each case is so independent prognostication is difficult.
The usual GBS testing is the EMG and the CSF showing elevated protein, together with the clinical history and neurological exam. There are some types that have a specific antibody association with it, GM1, that helps in the diagnosis and differentiating it from Lambert-Eaton syndrome (also the EMG would have been distinctively different). So, the diagnosis sounds correct.
Unfortunately, I do not know about the support groups in Spain.
I do hope that your father has a steady recovery.
Sincerely,
CCF Neuro MD
Please ponder Kathy's post. Jonathan is deteriorating and comforting insight is welcomed with open arms. This being a Guillain Barre thread, I would think it appropriate for her to post here. Many thanks. - Christine
Slide down through the posts. Doc RPS does respond. I have been on this Forum since 98, way before my craniotomy. If it wasn't for Doc RPS, I wouldn't have made it through it... or my radiosurgery last year 11/17/99 to tell you the truth. I pray that he responds to Kathy. He has before and it turned out to be the longest post in the history of this forum. I apologize if I sound less than polite. Forgive me.
Please Doc RPS. We need your input and expertise. Jonathan is in dire straits. Thank you. "He conquers who endures."
With Sincerity,
Christine (CJ) (CJenkins)
I know you were. No harm done. Just help us pull for Doc RPS to respond. Kathy needs help. Thanks- Christine
Sorry that things haven't gotten better. What did Marvin N. at University of Mass say about the amino acid profile. In addition, what does Dr. Richard Kelly say about the urine organic acids? What did Patterson say before he left the Mayo? It sounds like your son has a defect in energy metabolism as we talked about before. One might suspect a ANT defect in the mitochondria, but the urine organic acids would be suggestive as the amino acids in the serum (unusually high alanine to lactate ratio). We do see dysautonomia in mitochondrial disease. I really think that Dr. Richard Kelly at the Kennedy Krieger at Johns Hopkins is one of the very best metabolic people in the World. It might be worthwhile to revisit the urine organic acids and get his imput.
Sincerely,
CCF Neuro MD
Thank you so much for responding to this "call". Jonathan needs your help and Kathy really needs the embracement. How about a good quote here, doc? How about 2 good quotes?
"The strong, sound mind is a mind that embraces all things, large and small."
and...
"In life there are meetings... which seem like fate."
With deep and sincere thanks,
Christine Jenkins
Thank you so much for taking the time and interest to respond.
I never heard from Dr. N. Dr. K said the organic acids indicated an unusual lack of salicylate metabolism." I don't know or nor have had any contact with Dr. Patterson. Is there anything more to be made of the changes in the CBC (i.e., low HGB and HCT with normal iron and iron binding capacity, elevated WBCs and lympocytes and leukocytes, and changes in the size and shape of the blood cells? Or the temperature problems in light of what I am told is a normal MRI of the brain x2? Should there not be a hypothalamic problem?
I am awaiting copies of everything from this last two week visit and will undertake your advice.
Can't thank you enough. You have never failed to steer us in a more accurate direction and I am seriously considering taking Jonathan to Cleveland Clinic if answers are not soon forthcoming. There is a Diagnostic Specialties Center at our corner here at home where they perform MRIs