Looking to connect with people who have non-diabetic neuropathy

I am on IVIG right now. Started at a dose of 150 g every 4 weeks. I started just as I was about to buy a wheelchair due to severe cramping in my legs. Extremely painful and I walk very slowly with stiff legs like a zombie. IVIG dramatically improved my symptoms - I could even do short walks with my dog in the woods! It stabilized at a 40-60% improvement of my symptoms. I would get improvement, but in the fourth week my symptoms would return. It turns out that the half life of IVIG is 21 days so this happens with some people. After much ado I got my doctor (who for a variety of reasons doesn't like IVIG and was disappointed when I self-paid for a trial out of my retirement it worked) to increase the frequency to every 3 weeks. Without telling me he reduced the dosing from 150 g to 70g. At this dose I didn't get the bounce and I have been walking like a zombie for the last two infusions. I have gotten him to increase it back to 100g every 3 weeks (133g every 4 weeks) so almost back to what it was so hoping for the next infusion (Monday-Wed) to bring on a miracle. My legs, feet and hands hurt yesterday more than they ever have.
My doctor is now talking about plasmapheresis which is his baby - the opposite of IVIG - take out my blood and remove my bad antibodies rather than adding extra antibodies.
Hoping to do a few more IVIG infusions at the original dose before giving up on IVIG. I know 2 people who use it to live an almost pre-neuropathy life.
Last comment: I usually don't have side-effect to meds but I itch intensely on my entire body below my neck and have developed serious eczema. Can't tell you the number of creams, lotions and pastes that I paster on my body, but so far being able to walk has made it worth it!

I am on IVIG right now. Started at a dose of 150 g every 4 weeks. I started just as I was about to buy a wheelchair due to severe cramping in my legs. Extremely painful and I walk very slowly with stiff legs like a zombie. IVIG dramatically improved my symptoms - I could even do short walks with my dog in the woods! It stabilized at a 40-60% improvement of my symptoms. I would get improvement, but in the fourth week my symptoms would return. It turns out that the half life of IVIG is 21 days so this happens with some people. After much ado I got my doctor (who for a variety of reasons doesn't like IVIG and was disappointed when I self-paid for a trial out of my retirement it worked) to increase the frequency to every 3 weeks. Without telling me he reduced the dosing from 150 g to 70g. At this dose I didn't get the bounce and I have been walking like a zombie for the last two infusions. I have gotten him to increase it back to 100g every 3 weeks (133g every 4 weeks) so almost back to what it was so hoping for the next infusion (Monday-Wed) to bring on a miracle. My legs, feet and hands hurt yesterday more than they ever have.
My doctor is now talking about plasmapheresis which is his baby - the opposite of IVIG - take out my blood and remove my bad antibodies rather than adding extra antibodies.
Hoping to do a few more IVIG infusions at the original dose before giving up on IVIG. I know 2 people who use it to live an almost pre-neuropathy life.
Last comment: I usually don't have side-effect to meds but I itch intensely on my entire body below my neck and have developed serious eczema. Can't tell you the number of creams, lotions and pastes that I paster on my body, but so far being able to walk has made it worth it!

I hope the next two doses turn around and make your dr see it works.
I do not believe the drs will give it to me since I’m only in pain not having trouble walking or anything like that.
Did the 2 people you know that do ivig also have problems other that just pain?

Both had multiple problems including pain and restricted mobility. I did as well and it was amazing to have the symptoms reverse not just be masked. Disappointed that it appears it isn't going to be as successful with me.

I am on IVIG right now. Started at a dose of 150 g every 4 weeks. I started just as I was about to buy a wheelchair due to severe cramping in my legs. Extremely painful and I walk very slowly with stiff legs like a zombie. IVIG dramatically improved my symptoms - I could even do short walks with my dog in the woods! It stabilized at a 40-60% improvement of my symptoms. I would get improvement, but in the fourth week my symptoms would return. It turns out that the half life of IVIG is 21 days so this happens with some people. After much ado I got my doctor (who for a variety of reasons doesn't like IVIG and was disappointed when I self-paid for a trial out of my retirement it worked) to increase the frequency to every 3 weeks. Without telling me he reduced the dosing from 150 g to 70g. At this dose I didn't get the bounce and I have been walking like a zombie for the last two infusions. I have gotten him to increase it back to 100g every 3 weeks (133g every 4 weeks) so almost back to what it was so hoping for the next infusion (Monday-Wed) to bring on a miracle. My legs, feet and hands hurt yesterday more than they ever have.
My doctor is now talking about plasmapheresis which is his baby - the opposite of IVIG - take out my blood and remove my bad antibodies rather than adding extra antibodies.
Hoping to do a few more IVIG infusions at the original dose before giving up on IVIG. I know 2 people who use it to live an almost pre-neuropathy life.
Last comment: I usually don't have side-effect to meds but I itch intensely on my entire body below my neck and have developed serious eczema. Can't tell you the number of creams, lotions and pastes that I paster on my body, but so far being able to walk has made it worth it!

Both had multiple problems including pain and restricted mobility. I did as well and it was amazing to have the symptoms reverse not just be masked. Disappointed that it appears it isn't going to be as successful with me.

So sorry you have to go through all this . I have not heard of Ivig yet as I am new to all this .

Arctic,

Did the other 2 people you know have mostly problems in feet and hands along with mobility issues or did they have pains elsewhere. My pains are I multiple areas so trying to figure out if SFN is my issue or other things

@user_ch98d0b5c - Well, I fit that condition...idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.

Hi Chris please send me what works for you. I was diagnosed with idiopathic small fiber neuropathy in 2003 and the last several years the pain is really bad in my feet. I have no numbness and no balance issues just pain. Been to Duke and Emory and same diagnosis. Thanks Bruce.