Hi Harley 22,
What is your diagnostic and what other meds or treatment have you taken that did help you? .y diagnosis is idiopathic neuropathy and IVIG is not doing it. Prednisone and a lot 2 hours daily exercise is returning me to walk
My diagnosis is CIDP basically.
Numbness and tingling in my feet, unable to balance without a cane or walker.
Numbness now in my right hand, cannot hold things even a pen.
I’m trying to use my left hand whenever I can, but doesn’t always work.
My lips and cheeks are also numb, and have been like this for past 11 yrs.
I’ve been thru all the testing like EMGs, spinal taps, bone marrow biopsies, on all the meds like Gabapentin, Lyrica,etc.
I have an elevated protein level in my spinal fluid, cause unknown.
I’ve done and had all the meds and treatments that’s done for CIDP and nothing has helped.
Right now I’m at a standstill.
My neurologist offered me another infusion med called Retuximab, but my insurance won’t cover it and it’s very expensive.
Is IVIG a treatment you'll need forever? How often? For how long? Is it expensive is it?
I almost can't walk anymore because of the PN in my feet. It's definitely crippling. I used to be a runner, then a walker of 5 miles a day, and now....it's hard for me to walk through a grocery store. I'm so thankful for being able to order most of my groceries so I just do limited walking in the stores.
Normally PN has no cure because it deals with long fiber nerves. We are told that in anatomy and physiology in college. I went through RN school. Small Fiber Neuropathy is treated with IViG therapy. SFN affects heart, bladder, stomach and kidneys along with other organs. If you google Dr Anne Oaklander from the University of Boston she is a research neurologist. She has several YouTube where her seminars have been recorded. I have currently been scheduled to see her on Feb 8. She normally does not see patients so getting into her directly is difficult. She has been working on researching neuropathy since at least 2015.
My diagnosis is CIDP basically.
Numbness and tingling in my feet, unable to balance without a cane or walker.
Numbness now in my right hand, cannot hold things even a pen.
I’m trying to use my left hand whenever I can, but doesn’t always work.
My lips and cheeks are also numb, and have been like this for past 11 yrs.
I’ve been thru all the testing like EMGs, spinal taps, bone marrow biopsies, on all the meds like Gabapentin, Lyrica,etc.
I have an elevated protein level in my spinal fluid, cause unknown.
I’ve done and had all the meds and treatments that’s done for CIDP and nothing has helped.
Right now I’m at a standstill.
My neurologist offered me another infusion med called Retuximab, but my insurance won’t cover it and it’s very expensive.
Have you tried contacting the manufacturer. Normally they have discount programs for when you medicine is not covered. One of my medications is not covered by insurance but the manufacturer gave me a discount it went from over 400.00 to 45.00 a month.
<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>
No I haven’t contacted the company because I’ve tried to find out at the docs office,but no one ever calls me back.
I do know copay was for one of the drugs was $1100.00 per dose.
I would cont the manufacturer of the drug to see what they can do. I am currently using four manufacturers coupons for different medications to get my copay down. They were costing me way too much money. I have used IVIg therapy before until I turned 18 and now I am trying to get back on it. I fell off my parents insurance back then.
I would cont the manufacturer of the drug to see what they can do. I am currently using four manufacturers coupons for different medications to get my copay down. They were costing me way too much money. I have used IVIg therapy before until I turned 18 and now I am trying to get back on it. I fell off my parents insurance back then.
Previgin infusions did not help me.
Had 7 mos of infusions every 3 weeks x2 days per week.
Thank god my insurance covered the cost, but I’m disappointed it didn’t work for me.
Now I’ve been recommended Rituximab infusions by my neurologist, but my insurance will not cover it.
What they will cover is Rituxan, which would cost me a copay of $1100.00 each time I get it, and it’s not a guarantee that it will work for my CIDP.
As a result, I’ve decided to hold off for now, I can’t afford the copay, especially since there’s no guarantee it will work for me.
I’ve been getting IVIG for another condition for 6 months & also have PN for years but the IVIG has done nothing to help the PN.
Try LDN (Low Dose naltrexone) which has relieved most of my pain but not the numbness. Look here for details: https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/
I was misdiagnosed for CIDp from my first neurologist. Did the infusions for over a year. Big waste of $ for the insurance co. Hundreds of thousands. Had a second opinion. And just by examining me he knew I didn't have CIDP. Just periphial neuropathy. And he told me I was the 3rd patient that this Dr Groff misdiagnosed.
Previgin infusions did not help me.
Had 7 mos of infusions every 3 weeks x2 days per week.
Thank god my insurance covered the cost, but I’m disappointed it didn’t work for me.
Now I’ve been recommended Rituximab infusions by my neurologist, but my insurance will not cover it.
What they will cover is Rituxan, which would cost me a copay of $1100.00 each time I get it, and it’s not a guarantee that it will work for my CIDP.
As a result, I’ve decided to hold off for now, I can’t afford the copay, especially since there’s no guarantee it will work for me.
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.
Connect
Connect
Like
Helpful
Hug
My diagnosis is CIDP basically.
Numbness and tingling in my feet, unable to balance without a cane or walker.
Numbness now in my right hand, cannot hold things even a pen.
I’m trying to use my left hand whenever I can, but doesn’t always work.
My lips and cheeks are also numb, and have been like this for past 11 yrs.
I’ve been thru all the testing like EMGs, spinal taps, bone marrow biopsies, on all the meds like Gabapentin, Lyrica,etc.
I have an elevated protein level in my spinal fluid, cause unknown.
I’ve done and had all the meds and treatments that’s done for CIDP and nothing has helped.
Right now I’m at a standstill.
My neurologist offered me another infusion med called Retuximab, but my insurance won’t cover it and it’s very expensive.
-
Like -
Helpful -
Hug
1 ReactionNormally PN has no cure because it deals with long fiber nerves. We are told that in anatomy and physiology in college. I went through RN school. Small Fiber Neuropathy is treated with IViG therapy. SFN affects heart, bladder, stomach and kidneys along with other organs. If you google Dr Anne Oaklander from the University of Boston she is a research neurologist. She has several YouTube where her seminars have been recorded. I have currently been scheduled to see her on Feb 8. She normally does not see patients so getting into her directly is difficult. She has been working on researching neuropathy since at least 2015.
Have you tried contacting the manufacturer. Normally they have discount programs for when you medicine is not covered. One of my medications is not covered by insurance but the manufacturer gave me a discount it went from over 400.00 to 45.00 a month.
-
Like -
Helpful -
Hug
1 Reaction<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>
No I haven’t contacted the company because I’ve tried to find out at the docs office,but no one ever calls me back.
I do know copay was for one of the drugs was $1100.00 per dose.
I would cont the manufacturer of the drug to see what they can do. I am currently using four manufacturers coupons for different medications to get my copay down. They were costing me way too much money. I have used IVIg therapy before until I turned 18 and now I am trying to get back on it. I fell off my parents insurance back then.
-
Like -
Helpful -
Hug
1 ReactionI was on it for over 10 years.
I’ve been getting IVIG for another condition for 6 months & also have PN for years but the IVIG has done nothing to help the PN.
Try LDN (Low Dose naltrexone) which has relieved most of my pain but not the numbness. Look here for details: https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/
I was misdiagnosed for CIDp from my first neurologist. Did the infusions for over a year. Big waste of $ for the insurance co. Hundreds of thousands. Had a second opinion. And just by examining me he knew I didn't have CIDP. Just periphial neuropathy. And he told me I was the 3rd patient that this Dr Groff misdiagnosed.
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
-
Like -
Helpful -
Hug
2 Reactions