Has anyone had IVIG Infusions for Neuropathy?

<p>My name is Scott Walker,<br />In 2013 I started going to doctors with pain and numbness in my legs. I noticed at some point that climbing stairs was a bit more challenging, i was 59 yoa. In the last year I have had every test, seen every doctor, had ever blood test done in the world. Before this time the only real thing wrong with me was that I had Tarsel Tunnel in both ankle repaired. I am not diabetic, and have really no health issues and my family really are all long livers with zero medical issues that I know of.<br />In my search for answers we found that I had abused my body as a youth and had arthritis issues in my lower back. I ended up replacing 2 warn out hips and my right knee but none of this did anything for the leg pains. All I kept saying was that my legs felt like blocks of wood as I punched my thighs. In 2013 I went a Neurologist, Dr. Taylor, and had a full work up, but nothing was found. A million tests and the best I got was to loose 50 lbs. Hard to loose weight when the more you do the worse the pain gets and the longer it lasts. Then about three years i found a prescription I was given for joint pain which did nothing for it but i started taking it for muscle pain/inflammation called Melatonin 15 mg once a day and as was called by one Dr. the miracle drug it was a miracle. I could do so much more, I wasn't cured but the pain was substantially diminished. Trouble is the drug is hard on your kidneys and my nephrologist was concerned. But my primary Dr. Davis and others had tried everything ie low dose prednisone, gabapentin, fibromyalgia drugs, and many more.<br />The next good thing that happened to me was the recommendation to try a new drug called Qsymia. My weight was at 290 lbs mostly stomach weigh caused by excess carbs. not being processes by my system and going to fat. Qysmia is the combination of Phenermine and Topiramate in low doses. It has had almost no publicity for some reason compared to all the fads going and you have to be under a doctors supvision... But I am now at 225 lbs it still requires me to control what I eat but the cravings are gone and I do not do an exercize program but I try to stay busy as my body allows. My goal is 200 lbs. It has been about a year to 1 1/2 years since we started continuously down with plateaus and no major ups.<br />That brings us to now. I waited all summer to go to the neurologist again. Dr. Taylor. I got in a month early in Sept. as we were supposed to go to Florida in October because of a cancellation. He said you were here in 2013 and I did not even remember the visit. He did all of his tests, ... and said if you were stay in Maine I would be ordering a bunch of follow-up tests. I said I am here a month early, I have been searching for 10 years for an answer, how long we talking. Then I told him how I had had an M spike show up in my blood spin back in like 2020 but they found no cancers, ms, lupus,etc and then My Autoimmune system went haywire for the last couple years and nobody knows why and they just keep checking my blood and I just keep having numbness that seems to be speeding up in my arms and legs the last 3 years. He says can you come back tomorrow.<br />The next day I get a spinal tap, 2 skin biopsies from my hip and ankle and a dozen blood sample that went everywhere.<br />Outome - I had been tested for every other disease it seems under the sun except a couple that are relatively new. I go to my Primary care Dr. and she tells me that dr. Taylor believes I have CIDP and he is waiting for the biopsies to come back to determine if I also have Small Fiber Neuropathy. A week later that result comes back and my hip is ok but my ankle is a 2.9 reading which is below the low range of having it and I am sure if the did my arms I would have it from my elbows down to my wrists.<br />So I have a choice. Live with it and at some point end up in a wheel chair probable sooner than later. And this is a good time for a side note. I couldn't prove this but, all vaccine pretty much work at least partially by actuating your autoimmune system. You may have notice the large number of people who have had conditions and diseases go into warp speed in the last few years like mine. When my autoimmune system weent crazy it started looking for problems and made too many of something cells which is what are attacking the Mylan that surrounds my nerves causing them to short out and make the muscles tighen up exhausting them and me. So what are those shots doing to thousands of other people out there???<br />SO what is Next for me. Immunoglobulin treatments of Privigen infusions 5 days a month for 3 hour + for 3 months to start with to see if it works. I have done 2 months of sessions. They are not fun. You are tired, headaches, rashes, but there is some relief, some hope we will see because they say there is nothing else..<br />I put this out there. I know it is long. But I have a lot of data to share and there doesn't seem to be many people collecting data on such a new process. I have looked at the chats a little and will look some more. Currently traveling for a couple days, eill get back to people. Looking for answers. My Doctors says I am lucky, a few years ago the answers to what is going on in my body did not even exist. So lets get together and solve this The company that make Privigen has a pharmacist on call 24hrs a day I believe if you look it up there are people out there you just have to find the. I am sure I have missed a lot of imprtant facts.<br />Scott Walker Sr.</p>

<p>My name is Scott Walker,<br />In 2013 I started going to doctors with pain and numbness in my legs. I noticed at some point that climbing stairs was a bit more challenging, i was 59 yoa. In the last year I have had every test, seen every doctor, had ever blood test done in the world. Before this time the only real thing wrong with me was that I had Tarsel Tunnel in both ankle repaired. I am not diabetic, and have really no health issues and my family really are all long livers with zero medical issues that I know of.<br />In my search for answers we found that I had abused my body as a youth and had arthritis issues in my lower back. I ended up replacing 2 warn out hips and my right knee but none of this did anything for the leg pains. All I kept saying was that my legs felt like blocks of wood as I punched my thighs. In 2013 I went a Neurologist, Dr. Taylor, and had a full work up, but nothing was found. A million tests and the best I got was to loose 50 lbs. Hard to loose weight when the more you do the worse the pain gets and the longer it lasts. Then about three years i found a prescription I was given for joint pain which did nothing for it but i started taking it for muscle pain/inflammation called Melatonin 15 mg once a day and as was called by one Dr. the miracle drug it was a miracle. I could do so much more, I wasn't cured but the pain was substantially diminished. Trouble is the drug is hard on your kidneys and my nephrologist was concerned. But my primary Dr. Davis and others had tried everything ie low dose prednisone, gabapentin, fibromyalgia drugs, and many more.<br />The next good thing that happened to me was the recommendation to try a new drug called Qsymia. My weight was at 290 lbs mostly stomach weigh caused by excess carbs. not being processes by my system and going to fat. Qysmia is the combination of Phenermine and Topiramate in low doses. It has had almost no publicity for some reason compared to all the fads going and you have to be under a doctors supvision... But I am now at 225 lbs it still requires me to control what I eat but the cravings are gone and I do not do an exercize program but I try to stay busy as my body allows. My goal is 200 lbs. It has been about a year to 1 1/2 years since we started continuously down with plateaus and no major ups.<br />That brings us to now. I waited all summer to go to the neurologist again. Dr. Taylor. I got in a month early in Sept. as we were supposed to go to Florida in October because of a cancellation. He said you were here in 2013 and I did not even remember the visit. He did all of his tests, ... and said if you were stay in Maine I would be ordering a bunch of follow-up tests. I said I am here a month early, I have been searching for 10 years for an answer, how long we talking. Then I told him how I had had an M spike show up in my blood spin back in like 2020 but they found no cancers, ms, lupus,etc and then My Autoimmune system went haywire for the last couple years and nobody knows why and they just keep checking my blood and I just keep having numbness that seems to be speeding up in my arms and legs the last 3 years. He says can you come back tomorrow.<br />The next day I get a spinal tap, 2 skin biopsies from my hip and ankle and a dozen blood sample that went everywhere.<br />Outome - I had been tested for every other disease it seems under the sun except a couple that are relatively new. I go to my Primary care Dr. and she tells me that dr. Taylor believes I have CIDP and he is waiting for the biopsies to come back to determine if I also have Small Fiber Neuropathy. A week later that result comes back and my hip is ok but my ankle is a 2.9 reading which is below the low range of having it and I am sure if the did my arms I would have it from my elbows down to my wrists.<br />So I have a choice. Live with it and at some point end up in a wheel chair probable sooner than later. And this is a good time for a side note. I couldn't prove this but, all vaccine pretty much work at least partially by actuating your autoimmune system. You may have notice the large number of people who have had conditions and diseases go into warp speed in the last few years like mine. When my autoimmune system weent crazy it started looking for problems and made too many of something cells which is what are attacking the Mylan that surrounds my nerves causing them to short out and make the muscles tighen up exhausting them and me. So what are those shots doing to thousands of other people out there???<br />SO what is Next for me. Immunoglobulin treatments of Privigen infusions 5 days a month for 3 hour + for 3 months to start with to see if it works. I have done 2 months of sessions. They are not fun. You are tired, headaches, rashes, but there is some relief, some hope we will see because they say there is nothing else..<br />I put this out there. I know it is long. But I have a lot of data to share and there doesn't seem to be many people collecting data on such a new process. I have looked at the chats a little and will look some more. Currently traveling for a couple days, eill get back to people. Looking for answers. My Doctors says I am lucky, a few years ago the answers to what is going on in my body did not even exist. So lets get together and solve this The company that make Privigen has a pharmacist on call 24hrs a day I believe if you look it up there are people out there you just have to find the. I am sure I have missed a lot of imprtant facts.<br />Scott Walker Sr.</p>

I know that the numbers aren't high for success with IVig infusions. I wish that they had more effect on the pain, but if it's slowing the progression of CIDP, I figure that's a reasonable reason to continue with them for me. I hope you're able to find a helpful treatment.

I'm having surgery next Monday, and after that I'm starting to take low dose Naltrexone, hoping it will reduce the pain in my feet and ankles. I think I've tried every other possible medication, and if it doesn't help I'll be going back to MS Contin while I wait for a pain pump to become accessible here in central Oregon.

Jim

@stwalker717 I wonder if you were given Tylenol and Benadryl before each infusion. That's standard procedure for the nurses where I have mine done. I take them every morning anyway, so they don't have to mess with them for me. I've never had any side effects from the infusions myself.

About the inevitability of a wheelchair - I don't think that sf neuropathy should necessarily indicate it. Did your neurologist mention autonomic neuropathy? If that's present, you'd certainly expect any number of problems as it progresses, probably noticeable weakness in your arms and legs to begin with. That's more debilitating than sfpn, in my experience. I'm glad that I test only as very early AN, so I don't have significant issues yet.

My neurologist has had me take 10mg of Prednisone for a few years now, with the hope or expectation that it will slow down the progression.

Some non-prescription things that help me: a blanket lifter on my bed to keep the bedding off my feet, soaking my feet in cold tap water, lidocaine cream 5% (far less expensive online than prescription - $20 vs. $150 not covered by Medicare), shoes that are larger than my former size to allow for cushion insoles and more room for my toes, loose fitting socks - diabetic socks, don't stand still, but keep moving, sometimes a pillow under my feet helps, ice. Other people have lists of more things to try.

Just a few of my random thoughts after reading your post.

Take care of yourself.

Jim

They do give me Benadryl, Singular, and Tylenol before my infusions. I do not take any of these daily on my own other than an occasional tylenol for headache or pains. no mention of any autonomic suspicions yet but since the infusions i have been very cold, tired, not sleeping very well, food tastes different, things smell different, and my stomach is weird.. We tried low dose prednisone a few years back. I take 15 mg of meloxicam daily which works wonders but is not good for your Kidneys long term. Toes take a beating from bed covers makes them feel like I have gout. Biggest issu currently is a bumpy scaly dry rash that started on my arms and across my shoulders which goes crazy with itching and seems to come on in the evenings. I where soft bigger Addidas sneakers, dislike tight socks or socks period and use a people between my legs. I don't know if these infusions are helping or not. They seem to be helping the small outer nerves. Some days are good some bad.. in the beginning the nerves seemed to release the muscle tension which let a lot of things free, now I am just not sure where aai am and my blood counts are low and God know where my Autoimmune system numbers are they aniT score was 1/360. nobody seems to kno crap about all this stuff yet. Neurologist know Neurology, primary care are generalists, takes weeks to get to a specialist and which one, a friend works in a research lab that is your best bet, that and these chat room I think.

<p>My name is Scott Walker,<br />In 2013 I started going to doctors with pain and numbness in my legs. I noticed at some point that climbing stairs was a bit more challenging, i was 59 yoa. In the last year I have had every test, seen every doctor, had ever blood test done in the world. Before this time the only real thing wrong with me was that I had Tarsel Tunnel in both ankle repaired. I am not diabetic, and have really no health issues and my family really are all long livers with zero medical issues that I know of.<br />In my search for answers we found that I had abused my body as a youth and had arthritis issues in my lower back. I ended up replacing 2 warn out hips and my right knee but none of this did anything for the leg pains. All I kept saying was that my legs felt like blocks of wood as I punched my thighs. In 2013 I went a Neurologist, Dr. Taylor, and had a full work up, but nothing was found. A million tests and the best I got was to loose 50 lbs. Hard to loose weight when the more you do the worse the pain gets and the longer it lasts. Then about three years i found a prescription I was given for joint pain which did nothing for it but i started taking it for muscle pain/inflammation called Melatonin 15 mg once a day and as was called by one Dr. the miracle drug it was a miracle. I could do so much more, I wasn't cured but the pain was substantially diminished. Trouble is the drug is hard on your kidneys and my nephrologist was concerned. But my primary Dr. Davis and others had tried everything ie low dose prednisone, gabapentin, fibromyalgia drugs, and many more.<br />The next good thing that happened to me was the recommendation to try a new drug called Qsymia. My weight was at 290 lbs mostly stomach weigh caused by excess carbs. not being processes by my system and going to fat. Qysmia is the combination of Phenermine and Topiramate in low doses. It has had almost no publicity for some reason compared to all the fads going and you have to be under a doctors supvision... But I am now at 225 lbs it still requires me to control what I eat but the cravings are gone and I do not do an exercize program but I try to stay busy as my body allows. My goal is 200 lbs. It has been about a year to 1 1/2 years since we started continuously down with plateaus and no major ups.<br />That brings us to now. I waited all summer to go to the neurologist again. Dr. Taylor. I got in a month early in Sept. as we were supposed to go to Florida in October because of a cancellation. He said you were here in 2013 and I did not even remember the visit. He did all of his tests, ... and said if you were stay in Maine I would be ordering a bunch of follow-up tests. I said I am here a month early, I have been searching for 10 years for an answer, how long we talking. Then I told him how I had had an M spike show up in my blood spin back in like 2020 but they found no cancers, ms, lupus,etc and then My Autoimmune system went haywire for the last couple years and nobody knows why and they just keep checking my blood and I just keep having numbness that seems to be speeding up in my arms and legs the last 3 years. He says can you come back tomorrow.<br />The next day I get a spinal tap, 2 skin biopsies from my hip and ankle and a dozen blood sample that went everywhere.<br />Outome - I had been tested for every other disease it seems under the sun except a couple that are relatively new. I go to my Primary care Dr. and she tells me that dr. Taylor believes I have CIDP and he is waiting for the biopsies to come back to determine if I also have Small Fiber Neuropathy. A week later that result comes back and my hip is ok but my ankle is a 2.9 reading which is below the low range of having it and I am sure if the did my arms I would have it from my elbows down to my wrists.<br />So I have a choice. Live with it and at some point end up in a wheel chair probable sooner than later. And this is a good time for a side note. I couldn't prove this but, all vaccine pretty much work at least partially by actuating your autoimmune system. You may have notice the large number of people who have had conditions and diseases go into warp speed in the last few years like mine. When my autoimmune system weent crazy it started looking for problems and made too many of something cells which is what are attacking the Mylan that surrounds my nerves causing them to short out and make the muscles tighen up exhausting them and me. So what are those shots doing to thousands of other people out there???<br />SO what is Next for me. Immunoglobulin treatments of Privigen infusions 5 days a month for 3 hour + for 3 months to start with to see if it works. I have done 2 months of sessions. They are not fun. You are tired, headaches, rashes, but there is some relief, some hope we will see because they say there is nothing else..<br />I put this out there. I know it is long. But I have a lot of data to share and there doesn't seem to be many people collecting data on such a new process. I have looked at the chats a little and will look some more. Currently traveling for a couple days, eill get back to people. Looking for answers. My Doctors says I am lucky, a few years ago the answers to what is going on in my body did not even exist. So lets get together and solve this The company that make Privigen has a pharmacist on call 24hrs a day I believe if you look it up there are people out there you just have to find the. I am sure I have missed a lot of imprtant facts.<br />Scott Walker Sr.</p>

<p>My name is Scott Walker,<br />In 2013 I started going to doctors with pain and numbness in my legs. I noticed at some point that climbing stairs was a bit more challenging, i was 59 yoa. In the last year I have had every test, seen every doctor, had ever blood test done in the world. Before this time the only real thing wrong with me was that I had Tarsel Tunnel in both ankle repaired. I am not diabetic, and have really no health issues and my family really are all long livers with zero medical issues that I know of.<br />In my search for answers we found that I had abused my body as a youth and had arthritis issues in my lower back. I ended up replacing 2 warn out hips and my right knee but none of this did anything for the leg pains. All I kept saying was that my legs felt like blocks of wood as I punched my thighs. In 2013 I went a Neurologist, Dr. Taylor, and had a full work up, but nothing was found. A million tests and the best I got was to loose 50 lbs. Hard to loose weight when the more you do the worse the pain gets and the longer it lasts. Then about three years i found a prescription I was given for joint pain which did nothing for it but i started taking it for muscle pain/inflammation called Melatonin 15 mg once a day and as was called by one Dr. the miracle drug it was a miracle. I could do so much more, I wasn't cured but the pain was substantially diminished. Trouble is the drug is hard on your kidneys and my nephrologist was concerned. But my primary Dr. Davis and others had tried everything ie low dose prednisone, gabapentin, fibromyalgia drugs, and many more.<br />The next good thing that happened to me was the recommendation to try a new drug called Qsymia. My weight was at 290 lbs mostly stomach weigh caused by excess carbs. not being processes by my system and going to fat. Qysmia is the combination of Phenermine and Topiramate in low doses. It has had almost no publicity for some reason compared to all the fads going and you have to be under a doctors supvision... But I am now at 225 lbs it still requires me to control what I eat but the cravings are gone and I do not do an exercize program but I try to stay busy as my body allows. My goal is 200 lbs. It has been about a year to 1 1/2 years since we started continuously down with plateaus and no major ups.<br />That brings us to now. I waited all summer to go to the neurologist again. Dr. Taylor. I got in a month early in Sept. as we were supposed to go to Florida in October because of a cancellation. He said you were here in 2013 and I did not even remember the visit. He did all of his tests, ... and said if you were stay in Maine I would be ordering a bunch of follow-up tests. I said I am here a month early, I have been searching for 10 years for an answer, how long we talking. Then I told him how I had had an M spike show up in my blood spin back in like 2020 but they found no cancers, ms, lupus,etc and then My Autoimmune system went haywire for the last couple years and nobody knows why and they just keep checking my blood and I just keep having numbness that seems to be speeding up in my arms and legs the last 3 years. He says can you come back tomorrow.<br />The next day I get a spinal tap, 2 skin biopsies from my hip and ankle and a dozen blood sample that went everywhere.<br />Outome - I had been tested for every other disease it seems under the sun except a couple that are relatively new. I go to my Primary care Dr. and she tells me that dr. Taylor believes I have CIDP and he is waiting for the biopsies to come back to determine if I also have Small Fiber Neuropathy. A week later that result comes back and my hip is ok but my ankle is a 2.9 reading which is below the low range of having it and I am sure if the did my arms I would have it from my elbows down to my wrists.<br />So I have a choice. Live with it and at some point end up in a wheel chair probable sooner than later. And this is a good time for a side note. I couldn't prove this but, all vaccine pretty much work at least partially by actuating your autoimmune system. You may have notice the large number of people who have had conditions and diseases go into warp speed in the last few years like mine. When my autoimmune system weent crazy it started looking for problems and made too many of something cells which is what are attacking the Mylan that surrounds my nerves causing them to short out and make the muscles tighen up exhausting them and me. So what are those shots doing to thousands of other people out there???<br />SO what is Next for me. Immunoglobulin treatments of Privigen infusions 5 days a month for 3 hour + for 3 months to start with to see if it works. I have done 2 months of sessions. They are not fun. You are tired, headaches, rashes, but there is some relief, some hope we will see because they say there is nothing else..<br />I put this out there. I know it is long. But I have a lot of data to share and there doesn't seem to be many people collecting data on such a new process. I have looked at the chats a little and will look some more. Currently traveling for a couple days, eill get back to people. Looking for answers. My Doctors says I am lucky, a few years ago the answers to what is going on in my body did not even exist. So lets get together and solve this The company that make Privigen has a pharmacist on call 24hrs a day I believe if you look it up there are people out there you just have to find the. I am sure I have missed a lot of imprtant facts.<br />Scott Walker Sr.</p>

I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no abnormal autoimmune or inflammatory tests. Went from working around the world to being disabled in less than a year. Had to push my neurologist to prescribe it and then push him to help me appeal my insurance coverage, which he did reluctantly. When I exhausted the appeals I was taking wheelchairs through airports and it was looking like I would be using it much more frequently. I have had to self-fund and OMG what a difference. 40% of my symptoms (feet, legs, hands, face...) were gone in a week and it continues to get better. A friend with idiopathic short fiber neuropathy has gone on IVIG and eliminated 100% of her symptoms. There is a double blind trial out of MGH testing IVIG on idiopathic short fiber neuropathy. You can contact Dr. Oaklander at MGH for information, not sure when they will be recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

IVIG is really restricted by all insurance companies and is being more restricted by the year. There are economic incentives for some doctors not to recommend it. I have been surprised how little there has been on this site about IVIG as it is the only thing I have seen in my research that can reverse many neuropathic symptoms.