Glimmer of hope
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pmbenb83
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Hi Patricia and Arlene
Yes it is the same as IVIg. (Intravenous immunoglobulin) It suppresses the immune system and multiple sclerosis and Guillain Barre patients seem to have a good response with it. The nurse and doctor said that they still don't know how or why this works. She did say that even if he has good results, it doesn't clear him from ALS, which we were hoping it would. The infusion center that he visits is extremely full of people having it done. I was very surprised by how many and with various different illnesses.
My husband is going next week for his second treatment. He met with his local neurologist this past Monday and she saw some improvements in a couple of areas and a decrease in other areas. His left hand is getting a little weaker now and his fingers on both hands cramp and curl under at times. His doctors are still confused because he has symptoms of both MMN and ALS. He will go back to UVA in February for another EMG to see if there are any improvements/changes. If he has improvement, then I guess he will have this treatment regularly.
For now, all we can do is wait and enjoy life to its fullest.... with 3 kids in college, it doesn't take much for it to be our fullest. LOL In the meantime, we're still hanging on to our "glimmer of hope."
Take care.
Pam B in Va
Yes it is the same as IVIg. (Intravenous immunoglobulin) It suppresses the immune system and multiple sclerosis and Guillain Barre patients seem to have a good response with it. The nurse and doctor said that they still don't know how or why this works. She did say that even if he has good results, it doesn't clear him from ALS, which we were hoping it would. The infusion center that he visits is extremely full of people having it done. I was very surprised by how many and with various different illnesses.
My husband is going next week for his second treatment. He met with his local neurologist this past Monday and she saw some improvements in a couple of areas and a decrease in other areas. His left hand is getting a little weaker now and his fingers on both hands cramp and curl under at times. His doctors are still confused because he has symptoms of both MMN and ALS. He will go back to UVA in February for another EMG to see if there are any improvements/changes. If he has improvement, then I guess he will have this treatment regularly.
For now, all we can do is wait and enjoy life to its fullest.... with 3 kids in college, it doesn't take much for it to be our fullest. LOL In the meantime, we're still hanging on to our "glimmer of hope."
Take care.
Pam B in Va
AHands
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Where/how do they come by the donated Ig?
Do you get a relative to donate?
What symptoms differ between ALS and MMN?
How does one determine if one is a candidate for IVIg (besides physician's advice)?
Personally, I have a close relative anxious to donate bone-marrow for me, but I haven't found info on that--what I've seen with respect to bone marrow for ALS has to do with stem cells and they use the PALS own marrow, not a donor's. I think they get stem cells from the patient's marrow and inject them into the patient's CSF, but I might be wrong.
Regarding the immune system attacking the nerves: I think this is "normal", that is the immune system will destroy the nerves IF given a chance. That's why we have a "blood brain barrier" that allows blood, but prevents antibodies from getting to the brain and nerves. Thats also why infections in the brain and spine are so dangerous--no antibodies to fight them, and many antibiotics cannot get through the BBE either. Fortunately, most viruses cannot get through the BBE either.
I think an autoimmune attack on the nerves can be distinguished from ALS by the EMG/NCS that we all know and love :wink: I think if your nerves are being damaged by your immune system, it will be the myelin sheath that is damaged, and that will show up on these tests. If the myelin sheath is damaged, you probably have something like MS as opposed to ALS.
This is all a lot of "I think"s. I am NOT a health care professional, just a guy with motor nerve problems and Google. If my understanding differs from yours, please let me know!
Do you get a relative to donate?
What symptoms differ between ALS and MMN?
How does one determine if one is a candidate for IVIg (besides physician's advice)?
Personally, I have a close relative anxious to donate bone-marrow for me, but I haven't found info on that--what I've seen with respect to bone marrow for ALS has to do with stem cells and they use the PALS own marrow, not a donor's. I think they get stem cells from the patient's marrow and inject them into the patient's CSF, but I might be wrong.
Regarding the immune system attacking the nerves: I think this is "normal", that is the immune system will destroy the nerves IF given a chance. That's why we have a "blood brain barrier" that allows blood, but prevents antibodies from getting to the brain and nerves. Thats also why infections in the brain and spine are so dangerous--no antibodies to fight them, and many antibiotics cannot get through the BBE either. Fortunately, most viruses cannot get through the BBE either.
I think an autoimmune attack on the nerves can be distinguished from ALS by the EMG/NCS that we all know and love :wink: I think if your nerves are being damaged by your immune system, it will be the myelin sheath that is damaged, and that will show up on these tests. If the myelin sheath is damaged, you probably have something like MS as opposed to ALS.
This is all a lot of "I think"s. I am NOT a health care professional, just a guy with motor nerve problems and Google. If my understanding differs from yours, please let me know!
Thumbs Up
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Yes I know what you mean. When I read the posts I feel so bad for everyone because I've been there, I have held back answering some because I afraid I will say the wrong thing. I hope so far I haven't offended anyone. I really do want to help.
Al
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Hi Thumbs. I used to work with a guy that always said if you never make a mistake, well you probably didn't do much. So don't worry about things. Some people will always have something to say. As long as we don't offend intentionally we're all OK.
AL.
AL.
pmbenb83
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Hi Crystal ~ Thanks for the words of encouragement. You have a wonderful holiday too! 
Hi AHands ~ I think only the doctor can make the decision to give someone IVIg. I agree with Al, I think the Ig is just from donations. We never thought of donating for him. I will ask when he has his appointment next week and I will let you know what they say. Have a nice holiday!
Pam B in Va
Hi AHands ~ I think only the doctor can make the decision to give someone IVIg. I agree with Al, I think the Ig is just from donations. We never thought of donating for him. I will ask when he has his appointment next week and I will let you know what they say. Have a nice holiday!
Pam B in Va
AHands
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okay...yeah...blood donations. i was wondering if it was the sort of thing where its best to get the donation from a sibling, or otherwise "match" the donor? i realize its not "whole" blood, but Ig is the antibody part, right? therefor there might be a concern about autoimmune response in a poor match? i don't know.
i don't get the part about IV-Ig suppressing the immune system? I thought Ig = antibodies, therefor strengthen the immune system? Maybe since they're introducing foreign Ig they also administer some drug in conjunction which suppresses the immune system?
when you said "but his GM1 didn't support it" i was thinking "GM1" referred to a person, but now I see "GM1" is a component of blood plasma, or a blood test, right? i guess the blood test is really a count of anti-GM1 antibodies. i gather that its when this test comes back outside normal that they consider IV-Ig treatment? Kudos to your husband for pushing for the IV-Ig treatment even without the abnormal GM1 test! it seems increasingly evident that, as one doctor put it, you won't get the kind of aggressive treatment a doctor would order for a member of there own family unless you research and push.
it seems to me that in general medical science is sort of reverse-engineering--we start with symptoms and work "backwards" for years, centuries, or longer to the cause(s). (maybe thats the difference between "science" and "engineering"?) so, we put a name on the symptoms, and later discover that there are truly several "diseases" that fall under that name. diabetes seems like a good example: the first noted symptom was high sugar in the urine. eventually it was discovered that the severe "type I", or "child-onset", diabetes is an autoimmune problem wherein the immune system destroys the pancreas, while "type II", or adult-onset, patients have a healthy pancreas, but some unknown something prevents the normal insulin effect from occurring--either cause results in the same symptoms. Hence, two diseases with one name.
ALS seems to be at LEAST two diseases--we can already distinguish "familial" vs "sporadic", and i bet it wont be long before sporadic als gets subdivided into multiple causes, and possibly distinct treatments. but for now "untreatable" seems to be a big part of the definition of the disease. So if IV-Ig, or any other treatment, improves a patient's situation, we conclude they must not have had "real ALS" to begin with. Here's to hoping it turns out that NOBODY has "the real" McCoy! :-D
i don't get the part about IV-Ig suppressing the immune system? I thought Ig = antibodies, therefor strengthen the immune system? Maybe since they're introducing foreign Ig they also administer some drug in conjunction which suppresses the immune system?
when you said "but his GM1 didn't support it" i was thinking "GM1" referred to a person, but now I see "GM1" is a component of blood plasma, or a blood test, right? i guess the blood test is really a count of anti-GM1 antibodies. i gather that its when this test comes back outside normal that they consider IV-Ig treatment? Kudos to your husband for pushing for the IV-Ig treatment even without the abnormal GM1 test! it seems increasingly evident that, as one doctor put it, you won't get the kind of aggressive treatment a doctor would order for a member of there own family unless you research and push.
it seems to me that in general medical science is sort of reverse-engineering--we start with symptoms and work "backwards" for years, centuries, or longer to the cause(s). (maybe thats the difference between "science" and "engineering"?) so, we put a name on the symptoms, and later discover that there are truly several "diseases" that fall under that name. diabetes seems like a good example: the first noted symptom was high sugar in the urine. eventually it was discovered that the severe "type I", or "child-onset", diabetes is an autoimmune problem wherein the immune system destroys the pancreas, while "type II", or adult-onset, patients have a healthy pancreas, but some unknown something prevents the normal insulin effect from occurring--either cause results in the same symptoms. Hence, two diseases with one name.
ALS seems to be at LEAST two diseases--we can already distinguish "familial" vs "sporadic", and i bet it wont be long before sporadic als gets subdivided into multiple causes, and possibly distinct treatments. but for now "untreatable" seems to be a big part of the definition of the disease. So if IV-Ig, or any other treatment, improves a patient's situation, we conclude they must not have had "real ALS" to begin with. Here's to hoping it turns out that NOBODY has "the real" McCoy! :-D
pmbenb83
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Hi Ahands,
I don't think anything else is added to the Ig, but I will ask. I wish I would have thought about all of your questions before his first treatment. I think we were both thinking "just do something to fix him" and did not really research questions for the docs. Thanks for your inquisitive mind. I think my mind is exhausted and it helps to have someone new with questions to get it jump started thinking again. lol
Take care.
Pam B in Va
I don't think anything else is added to the Ig, but I will ask. I wish I would have thought about all of your questions before his first treatment. I think we were both thinking "just do something to fix him" and did not really research questions for the docs. Thanks for your inquisitive mind.
I think my mind is exhausted and it helps to have someone new with questions to get it jump started thinking again. lolTake care.
Pam B in Va
AHands
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Reading up on IVIG
Regarding getting Ig donations from family members: apparently IVIG treatments are manufactured from "human plasma derived from pools of 3000 to 10,000 donors".
Its apparently been FDA approved and used for a number of immune disorders for over thirty years. Its thought to have potential for Alzheimer's, MMN, MS and maybe ALS, but not studied enough in those applications for approval.
It's also very expensive.
Theres a recent article over at the-scientist.com about an IVIG supplier testing their product for West Nile Virus contamination (all clean) and discovering that preparations made from people exposed but immune to WNV may have potential for helping those who succumb to WNV.
(PS Pam, I went to jrhs in manassas and hs in dale city)
Regarding getting Ig donations from family members: apparently IVIG treatments are manufactured from "human plasma derived from pools of 3000 to 10,000 donors".
Its apparently been FDA approved and used for a number of immune disorders for over thirty years. Its thought to have potential for Alzheimer's, MMN, MS and maybe ALS, but not studied enough in those applications for approval.
It's also very expensive.
Theres a recent article over at the-scientist.com about an IVIG supplier testing their product for West Nile Virus contamination (all clean) and discovering that preparations made from people exposed but immune to WNV may have potential for helping those who succumb to WNV.
(PS Pam, I went to jrhs in manassas and hs in dale city)
donnah
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Dear Pam,
Hold on to hope, you did the right thing by diving into the treatment before everyone came up with "questions & concerns ". My Ben died 12/6/2006, he had ALS we knew in the end he had it because I fought tooth & nail for him to get the IVIG treatment. In the end we saw no improvement at all, but if we did not try I would have wondered the rest of my life "what if?" So my thoughts and prayers are with you and your husband I cheering you on ........................... So hold tight on your "HOPE"
Donna
Caregiver to Ben
Hold on to hope, you did the right thing by diving into the treatment before everyone came up with "questions & concerns ". My Ben died 12/6/2006, he had ALS we knew in the end he had it because I fought tooth & nail for him to get the IVIG treatment. In the end we saw no improvement at all, but if we did not try I would have wondered the rest of my life "what if?" So my thoughts and prayers are with you and your husband I cheering you on ........................... So hold tight on your "HOPE"
Donna
Caregiver to Ben
pmbenb83
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Hi Donna,
I am so sorry to hear about your husband. You sound a lot like me... trying to find some way to make this stop and not giving up without a fight. Thank you for your encouragement; we really appreciate it. This time around, the sickness from the treatment hasn't been as bad, but he isn't sure if he will try it again. I support whatever he wants to do or try... within reason.
Thanks again for your words of encouragement. Have a Happy New Year!
Pam B in Va
I am so sorry to hear about your husband. You sound a lot like me... trying to find some way to make this stop and not giving up without a fight. Thank you for your encouragement; we really appreciate it. This time around, the sickness from the treatment hasn't been as bad, but he isn't sure if he will try it again. I support whatever he wants to do or try... within reason.
Thanks again for your words of encouragement. Have a Happy New Year!
Pam B in Va
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