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Has anyone had IVIG Infusions for Neuropathy?

Neuropathy | Last Active: Oct 3 7:57am | Replies (491)

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@stwalker717

<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>

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Replies to "My name is Scott Walker,In 2013 I started going to doctors with pain and numbness in..."

I have several autoimmune conditions, among them Sjogren's Syndrome. It is causing (along with the typical dryness) Small Fiber Neuopathy in my lower legs causing balance problems and muscle wasting. I was seeing a whole boatload of drs trying to figure it out as I did not have the typical sensory symptoms. (Pain, numbness, tingling) Took me about 7 yrs until a rheumatologis (3rd) spotted the Sjogren's Syndrome. My byopsis for SFM showed 0 nerve fibers in my knee and ankle samples. (Yet my EMG was normal.) I am now doing PT and IVIG and staying positive. Neurologist is hopeful I will ride again. Afterall, it is my joy-giver. Best of luck to you and don't give up!

@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

What kind of infusions are we talking about? I'm talking about IVIg. In the begining they give me benadrill, pepcid, two tylenol and a short acting IV steroid. So far I've had no side effects, nor help with my SFN. I think my body is distroying the nerves as they regenerate. At least it would explain the zero counts of my nerve fibers. Just thinking out loud...

Hello @stwalker717. Welcome to Mayo Clinic Connect. You certainly have had a long journey and one that you've stayed diligent with. I wanted to connect you with others who have been discussing IVIG infusions for neuropathy so you will notice I have moved your post here:
- Has anyone had IVIG Infusions for Neuropathy?: https://connect.mayoclinic.org/discussion/ivig-infusions/

Members such as @harley22 @artemis1886 @solobeee1 @james84 and @jimhd have all been discussing infusions and may be able to come in and share with you.

How are your treatments going and at what point are you anticipated to feel a difference?