Has anyone experienced IVIG. This was brought up by my Neurologist. Upon my research, it is for autoimmune diseases among others. Once started you have to have regular infusions. Has this helped anyone? Your feedback is greatly appreciated. Thank you.
Personally I have never had IVIG, because my ataxia is not autoimmune driven. If a persons ataxia is part of an autoimmune disease (for example: Gluten Ataxia), I've heard it can (IVIG infusions) be very helpful. Hopefully, someone who's actually experienced IVIG infusions will answer you..., ;o)
Hi James-
My group of specialists are encouraging me to begin IVIG treatment as I am also a Lupus patient. I have yet to do it as I have not come across enough evidence that would suggest it actually improves or helps the symptoms of ataxia.
Please keep us up to date if you decide to begin treatment.
Thank you and many happy blessings!
Lorraine
My 20 month old son was diagnosed with cerebellar ataxia 5 months ago and they are talking about giving him IVIG also. I know absolutely nothing about it and am curious also.
I just looked up some information on IVIG and I don't think we will be doing it. We are uninsured and the cost is between $3,000-$10,000 a treatment!!!
I was mis diagnosed for quite a few years. The last diagnoses I got was a Dr thought and told me that my organs would die off one by one and within 4 years that would be it I'd die. So I felt that I need to go to the Mayo Clinic for a diagnosis as a last resort. I grew up back east hearing if you couldn't get a diagnosis and it was life threatening that people go there. So the wait list was over a year but I got lucky and was able to pull some strings and got an apt withing 3 months.
After lot's of invasive testing (because they were very thrall). I was also told to have intervenes treatments by the Mayo Clinic in Minnesota in 2006,
in hopes to stop the degeneration of my cerebellum. It was the in hopes that got me thinking that they were just guessing. And if the Mayo was guessing that is when I started to believe that maybe since I had more of a interest in living that I needed to start finding out about this ataxia. So I figured and still do that I can always go that route if this doesn't work. I think what do I have to loose? I know my body and am more in touch with how it feels doing thing. I live in here. I don't put much faith in Dr's like they are a god or something. To me since I also did their hair cuts I know they are just people that have bad days too. So............
I also was told that should get 1 treatment per week and have to be there for 5 hours each 3-4 treatments, and that I'd gain about 30 lbs each week. I have to be honest, it freaked me out I thought how good could that be for my body. So I told them what the heck I've got nothing to loose I'll try it naturally myself first. That is when I stopped Gluten, then went to not having any flour then re fined sugars, nothing packaged or pre made, Organic as much as possible, and joined this group to help me stay away from these foods to get support while doing it. I was getting 1 MRI every year since to watch the degeneration. After a few years being off of all this my last 3 MRI's now don't show any more degeneration of my cerebellum. I've now graduated to having one ever 2 years now. Because my Dr doesn't really understand it. He said once it starts you can't stop it. But clearly either it has or slowed way down so he wants to watch it. I smiled and told him that I stopped it! He smiled and said that I may have but he still wants to do MRI's just to chart it.
Now I hear that the program Food Addicts in Recovery is really strick compared to other programs about food out there, but hey it helps me. I need something stricter because to me it's life or death. Here is one that is less stick that outlines what I'm doing just in case you want to try it. They also have a food plan there. Check this out when you have some time to see if it helps you too: http://www.foodaddictsanonymous.org/abstinence hope this helps someone that reads this! :0)
I just saw gluten ataxia today on here for the first time. I had never heard of it and am starting my son on a gluten-free diet today so I'm so glad that you posted this!!! I will look at the site you listed. How long before you saw improvements from the diet?
Jeannie Ball said:
I was mis diagnosed for quite a few years. The last diagnoses I got was a Dr thought and told me that my organs would die off one by one and within 4 years that would be it I'd die. So I felt that I need to go to the Mayo Clinic for a diagnosis as a last resort. I grew up back east hearing if you couldn't get a diagnosis and it was life threatening that people go there. So the wait list was over a year but I got lucky and was able to pull some strings and got an apt withing 3 months.
After lot's of invasive testing (because they were very thrall). I was also told to have intervenes treatments by the Mayo Clinic in Minnesota in 2006,
in hopes to stop the degeneration of my cerebellum. It was the in hopes that got me thinking that they were just guessing. And if the Mayo was guessing that is when I started to believe that maybe since I had more of a interest in living that I needed to start finding out about this ataxia. So I figured and still do that I can always go that route if this doesn't work. I think what do I have to loose? I know my body and am more in touch with how it feels doing thing. I live in here. I don't put much faith in Dr's like they are a god or something. To me since I also did their hair cuts I know they are just people that have bad days too. So............
I also was told that should get 1 treatment per week and have to be there for 5 hours each 3-4 treatments, and that I'd gain about 30 lbs each week. I have to be honest, it freaked me out I thought how good could that be for my body. So I told them what the heck I've got nothing to loose I'll try it naturally myself first. That is when I stopped Gluten, then went to not having any flour then re fined sugars, nothing packaged or pre made, Organic as much as possible, and joined this group to help me stay away from these foods to get support while doing it. I was getting 1 MRI every year since to watch the degeneration. After a few years being off of all this my last 3 MRI's now don't show any more degeneration of my cerebellum. I've now graduated to having one ever 2 years now. Because my Dr doesn't really understand it. He said once it starts you can't stop it. But clearly either it has or slowed way down so he wants to watch it. I smiled and told him that I stopped it! He smiled and said that I may have but he still wants to do MRI's just to chart it.
Now I hear that the program Food Addicts in Recovery is really strick compared to other programs about food out there, but hey it helps me. I need something stricter because to me it's life or death. Here is one that is less stick that outlines what I'm doing just in case you want to try it. They also have a food plan there. Check this out when you have some time to see if it helps you too: http://www.foodaddictsanonymous.org/abstinence hope this helps someone that reads this! :0)
Jabooshi, Well thinking back since I was on Gluten for 46 years it was longer I hear now. I guess it really depends on how many years a person has been on when it kicks in.
I had a blood test by my GP and it came out normal that I didn't have sensitivity to Gluten but she said to try it for a few weeks to see how I felt. After about 1 month I felt just a little bit better, but after 3 months my siatic nerve left so I attribute that to Gluten. The longer I've been off the more things I seem to let go of, so I have stayed off since. It has slowed down ofcourse now but I look at it if I choose to have any it might start up again and there is no way I'm gonna chance that. I beleive the combo is what is doing it.For me It's really just a mind set.
Since going off all flour it seemed just easier for me to do than checking out to see if it's really Gluten free. I found a few things out there had traces but were low so they still could call it Gluten free. I figure I was safer not having any. Now sugar was another thing. But after 3 days of not having any color because a bit more clear. And foods started to taste just a little bit better being natural. So I stopped white knuckeling it after a few weeks. When I say white knuckeling it I mean that it called me to eat it. Now I can touch it and it doesn't bother me to have the need to eat any. But I still found out I could use the support.
They are learning what refined sugar really is doing to our brains and I don't need or want to mess with mine.
I still have some symtoms of ataxia, so I guess that won't go away and I'm ok with managing it now but I feel more incharge of it now. I enclude streching and getting stronger with my core that helps me funtion along with this. It's a full time job, but hey I think it's worth doing it, or should I say I'm worth doing it. What else is more important right? I try to focus on what I can do and not worry about what I can't. I don't have the time. I've got more important things that fill up my time now.
I still have the choice in the back of my mind that I can always do the intervious if this doesn't work. But what do I have to loose. :0)Hope that helps you. :0)
Dr Perlman at UCLA recommended this for me 7 years ago. She said she had seen improvement with her other ataxia patients who also had hashimotos thyroid (which I have). When I got back to OHSU in Oregon they tested me for Hashimotos Antibodies and they where no longer showing up so I didn’t get the treatment. My ataxia is likely hereditary but has no clear diagnosis. Cerebellum is not deteriorating but I’m definitely ataxic with lots of vertigo. It now sounds like this is the treatment of the day for ataxia. I’d like to hear more about it but want to say that anyone with this disease for any length of time knows that all the docs are really guessing and we are without a doubt their experiments. I’ve seen good improvement with gluten free diet which forced me to eat additive free whole foods to achieve. I don’t think I’m allergic to gluten but a clean diet really makes my life better. My doc encouraged me to try gluten free for 6 months saying, “there’s a lot we don’t know about the effects of gluten”. I think there is much to learn about how to treat ataxia. Please keep us posted on what you find out on IVIG.
hi Jabooshi
Just to say I’ve posted a Gluten free guide you might find useful.
In the search box put Useful Gluten Free guide in General and you should find it there
Hope it helps.
Ive been Gf now for nearly twenty years. Give me a shout if you need any help with it
Go steady,
FeelingOurWay
Jabooshi said:
I just saw gluten ataxia today on here for the first time. I had never heard of it and am starting my son on a gluten-free diet today so I’m so glad that you posted this!!! I will look at the site you listed. How long before you saw improvements from the diet?
Jeannie Ball said:I was mis diagnosed for quite a few years. The last diagnoses I got was a Dr thought and told me that my organs would die off one by one and within 4 years that would be it I’d die. So I felt that I need to go to the Mayo Clinic for a diagnosis as a last resort. I grew up back east hearing if you couldn’t get a diagnosis and it was life threatening that people go there. So the wait list was over a year but I got lucky and was able to pull some strings and got an apt withing 3 months.
After lot’s of invasive testing (because they were very thrall). I was also told to have intervenes treatments by the Mayo Clinic in Minnesota in 2006,
in hopes to stop the degeneration of my cerebellum. It was the in hopes that got me thinking that they were just guessing. And if the Mayo was guessing that is when I started to believe that maybe since I had more of a interest in living that I needed to start finding out about this ataxia. So I figured and still do that I can always go that route if this doesn’t work. I think what do I have to loose? I know my body and am more in touch with how it feels doing thing. I live in here. I don’t put much faith in Dr’s like they are a god or something. To me since I also did their hair cuts I know they are just people that have bad days too. So…
I also was told that should get 1 treatment per week and have to be there for 5 hours each 3-4 treatments, and that I’d gain about 30 lbs each week. I have to be honest, it freaked me out I thought how good could that be for my body. So I told them what the heck I’ve got nothing to loose I’ll try it naturally myself first. That is when I stopped Gluten, then went to not having any flour then re fined sugars, nothing packaged or pre made, Organic as much as possible, and joined this group to help me stay away from these foods to get support while doing it. I was getting 1 MRI every year since to watch the degeneration. After a few years being off of all this my last 3 MRI’s now don’t show any more degeneration of my cerebellum. I’ve now graduated to having one ever 2 years now. Because my Dr doesn’t really understand it. He said once it starts you can’t stop it. But clearly either it has or slowed way down so he wants to watch it. I smiled and told him that I stopped it! He smiled and said that I may have but he still wants to do MRI’s just to chart it.
Now I hear that the program Food Addicts in Recovery is really strick compared to other programs about food out there, but hey it helps me. I need something stricter because to me it’s life or death. Here is one that is less stick that outlines what I’m doing just in case you want to try it. They also have a food plan there. Check this out when you have some time to see if it helps you too: http://www.foodaddictsanonymous.org/abstinence hope this helps someone that reads this! :0)
Hi James,
I'm new here. I was diagnosed with Celiac 15 years ago (most likely had much longer) which is an autoimmune disease, and diagnosed with Grave's disease, another autoimmune disease, four years ago, and diagnosed with Spinocerebellar Ataxia three years ago, but most likely had it for 12 years.
We are working toward getting our insurance to try IVIG due to all the autoimmue problems, in the hope that will ease my SCA.
I have a friend who moved to Los Angeles to save her young daughter's life with IVIG and a brillant doctor at UCLA. Her daughter has a disease leaving her with nearly no immune system. IVIG gives her a life for six weeks at a time.
IVIG is given every three to six weeks through IV and is made from blood taken from 1000 different doners! This is the reason it is very expensive. The blood is processed and the good, clean anitbodies are what you receive in your IV. Those antibodies attach themselves to your sick antibodies and make them stop attacking your body. You feel very near normal for 3 to 6 weeks.
I've seen my friend's daughter go from lying on the couch, very sickly, to running through the back yard playing and chatting away after her IVIG. My friend, over the years of taking care of her daughter, got her own PHD allowing her to give the infusions to her daughter at home. She has also found companies that vary greatly on thier prices and really has the whole process down pat.
I do believe you have to wait a week or two after the benefits of the IVIG wear off before you can have the next infusion, as insurance only allows a particular amount and time limit.
My doctor has a paitent who receives IVIG for MS, and she said he is bedridden until his infusions and then he is able to hit golfballs, not actually play a full game, but can at least get on the court and hit a bucket full.
I'm praying my insurance decides to allow me IVIG, since there is no cure for my ataxia, it would be wonderful to at least be able to spend some real quality time with my family, even if it's three weeks at a time. There is still the chance it won't work. The last study I read tested seven Ataxia paitents with IVIG. Five received excellent results, and two paitents found no change. But I'm ready to try! It's the only hope I have to enjoy some of my life.
Please post if you get started on IVIG! I love to hear from people how it's working for them. In the meantime, I'm still waiting for my insurance company to decide to help pay for IVIG.
Robin :)
hi Robin!
Me too a coeliac! This may be an option for me but I'm still waiting for lumbar puncture results.
What sort of SCA do you have?I'll make a you a friend so we can chat?!
Go steady,
FeelingOurWay
Robin Yule said:
Hi James,
I'm new here. I was diagnosed with Celiac 15 years ago (most likely had much longer) which is an autoimmune disease, and diagnosed with Grave's disease, another autoimmune disease, four years ago, and diagnosed with Spinocerebellar Ataxia three years ago, but most likely had it for 12 years.
We are working toward getting our insurance to try IVIG due to all the autoimmue problems, in the hope that will ease my SCA.
I have a friend who moved to Los Angeles to save her young daughter's life with IVIG and a brillant doctor at UCLA. Her daughter has a disease leaving her with nearly no immune system. IVIG gives her a life for six weeks at a time.
IVIG is given every three to six weeks through IV and is made from blood taken from 1000 different doners! This is the reason it is very expensive. The blood is processed and the good, clean anitbodies are what you receive in your IV. Those antibodies attach themselves to your sick antibodies and make them stop attacking your body. You feel very near normal for 3 to 6 weeks.
I've seen my friend's daughter go from lying on the couch, very sickly, to running through the back yard playing and chatting away after her IVIG. My friend, over the years of taking care of her daughter, got her own PHD allowing her to give the infusions to her daughter at home. She has also found companies that vary greatly on thier prices and really has the whole process down pat.
I do believe you have to wait a week or two after the benefits of the IVIG wear off before you can have the next infusion, as insurance only allows a particular amount and time limit.
My doctor has a paitent who receives IVIG for MS, and she said he is bedridden until his infusions and then he is able to hit golfballs, not actually play a full game, but can at least get on the court and hit a bucket full.
I'm praying my insurance decides to allow me IVIG, since there is no cure for my ataxia, it would be wonderful to at least be able to spend some real quality time with my family, even if it's three weeks at a time. There is still the chance it won't work. The last study I read tested seven Ataxia paitents with IVIG. Five received excellent results, and two paitents found no change. But I'm ready to try! It's the only hope I have to enjoy some of my life.
Please post if you get started on IVIG! I love to hear from people how it's working for them. In the meantime, I'm still waiting for my insurance company to decide to help pay for IVIG.
Robin :)
Hi Robin
Any further news on what be happening for you. I’m coeliac too and they are considering this for me depending on how things go. I’ll make a you a friend so we can chat. I’m waiting for my lumbar puncture results.