Haven’t had that, but recently had alpha-Linoic acid injections once a week and my neuropathy is gone. Company called B-12 in Sarasota, fl gave them and I was amazed. Oral tablets didn’t work. Only lasts about a week & cost $30. But I didn’t care
So, to those that the IVig did not help (the following questions are not meant to be snarky just thought provoking): while on IVig dis the neuropathy get worse or hold steady? Did you do anything else to help it along, such as diet, exercise, foot stretches, PT., Shockwave therapy, cold laser treatment, myofascial release, cranial sacral therapy, the supplement regimen that @johnbishop recommends ? Why was the IVig recommended by your doctor in the first place? What was the goal? Reduce stress on the nerves, by lowering inflammation. Happy nerves can glide unhappy nerves do not. I think that IVig could do that, it just takes a wee bit of time to get there.
JFN
I will get in contact with Mass General and find out if I can get a recommendation for treatment plans. I live in New England and I am on Medicare but I most likely will have to pay out of pocket if I can arrange an appointment. Thanks for post statement about Mass General.
@scott22
I am in New England, too, and understand MGH has neurologists who can help give you options for treatment of neuropathy. I was going to go there in 2017 but did not and wish I did. I was diagnosed with idiopathic small fiber neuropathy which has worsened from feet and calves to legs, arms, hands, autonomic nervous system, etc. I see a new neurologist at the end of April and will go to MGH if I don’t feel I am getting the best care for diagnosis and treatment.
I was on IVIG therapy from age 10-18. I went off of it when I went off my parts insurance. It worked wonders. I will tell you something else that is working. The United States isn’t there yet. I am using alpha lipoic acid. In Germany where my husband is stationed they use IV alpha lipoid acid. I have a lot of drug allergies so they started me off slow. I ordered the pills through Krogers Pharmacy I could not find it on the shelf. https://www.webmd.com/vitamins/ai/ingredientmono-767/alpha-lipoic-acid
It would give the same relative results as Benadryl. They are trying to prevent an allergic reaction. I always get Benadryl before but would not hesitate to switch if my protocol changed.
So, to those that the IVig did not help (the following questions are not meant to be snarky just thought provoking): while on IVig dis the neuropathy get worse or hold steady? Did you do anything else to help it along, such as diet, exercise, foot stretches, PT., Shockwave therapy, cold laser treatment, myofascial release, cranial sacral therapy, the supplement regimen that @johnbishop recommends ? Why was the IVig recommended by your doctor in the first place? What was the goal? Reduce stress on the nerves, by lowering inflammation. Happy nerves can glide unhappy nerves do not. I think that IVig could do that, it just takes a wee bit of time to get there.
JFN
IVIG therapy helps the neuropathy not to progress. What makes it worse is when you stop it. Here in Germany they use alpha liposuction acid since 1966. It works better by IV. The US is just now starting to use it.
Since, I have so many drug allergies they started me off slowly. I am at 400 mgs and can tell the difference. Germany has done a lot of studies on it. I had to order through the pharmacy in the US.
@scott22
I am in New England, too, and understand MGH has neurologists who can help give you options for treatment of neuropathy. I was going to go there in 2017 but did not and wish I did. I was diagnosed with idiopathic small fiber neuropathy which has worsened from feet and calves to legs, arms, hands, autonomic nervous system, etc. I see a new neurologist at the end of April and will go to MGH if I don’t feel I am getting the best care for diagnosis and treatment.
I will get in contact with Mass General and find out if I can get a recommendation for treatment plans. I live in New England and I am on Medicare but I most likely will have to pay out of pocket if I can arrange an appointment. Thanks for post statement about Mass General.
I don't pay a penny for IVIG or now SCIG infusions on a Medicare Advantage plan. I thought Medicare is covering it these days.
I’ve been on it since 2020 and I would not have a life without it, but I have CIDP not idiopathic.
600-1200 mgs of alpha lipoic acid. Germany has been using it by 1966 by IV for neuropathy. I could not find it in the store so I asked the Krogers pharmacist to order it for me. 8.00 a bottle and 60 pills. As always the United States is behind in research. I have severe axonal sensorimotor polyneuropathy, small fiber neuropathy along with cardiac autonomic neuropathy.
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Haven’t had that, but recently had alpha-Linoic acid injections once a week and my neuropathy is gone. Company called B-12 in Sarasota, fl gave them and I was amazed. Oral tablets didn’t work. Only lasts about a week & cost $30. But I didn’t care
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2 ReactionsHi to the above,
So, to those that the IVig did not help (the following questions are not meant to be snarky just thought provoking): while on IVig dis the neuropathy get worse or hold steady? Did you do anything else to help it along, such as diet, exercise, foot stretches, PT., Shockwave therapy, cold laser treatment, myofascial release, cranial sacral therapy, the supplement regimen that @johnbishop recommends ? Why was the IVig recommended by your doctor in the first place? What was the goal? Reduce stress on the nerves, by lowering inflammation. Happy nerves can glide unhappy nerves do not. I think that IVig could do that, it just takes a wee bit of time to get there.
JFN
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1 Reaction@scott22
I am in New England, too, and understand MGH has neurologists who can help give you options for treatment of neuropathy. I was going to go there in 2017 but did not and wish I did. I was diagnosed with idiopathic small fiber neuropathy which has worsened from feet and calves to legs, arms, hands, autonomic nervous system, etc. I see a new neurologist at the end of April and will go to MGH if I don’t feel I am getting the best care for diagnosis and treatment.
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2 Reactionsmarquist- Mine were only $15,000 per infusion!
How much Alpha Lipoic acid if taken orally, is appropriate?
It would give the same relative results as Benadryl. They are trying to prevent an allergic reaction. I always get Benadryl before but would not hesitate to switch if my protocol changed.
IVIG therapy helps the neuropathy not to progress. What makes it worse is when you stop it. Here in Germany they use alpha liposuction acid since 1966. It works better by IV. The US is just now starting to use it.
Since, I have so many drug allergies they started me off slowly. I am at 400 mgs and can tell the difference. Germany has done a lot of studies on it. I had to order through the pharmacy in the US.
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1 ReactionIf you decide to go see Dr Oaklander. You can google her and listen to some of her lectures
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2 ReactionsI don't pay a penny for IVIG or now SCIG infusions on a Medicare Advantage plan. I thought Medicare is covering it these days.
I’ve been on it since 2020 and I would not have a life without it, but I have CIDP not idiopathic.
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Helpful -
Hug
2 Reactions600-1200 mgs of alpha lipoic acid. Germany has been using it by 1966 by IV for neuropathy. I could not find it in the store so I asked the Krogers pharmacist to order it for me. 8.00 a bottle and 60 pills. As always the United States is behind in research. I have severe axonal sensorimotor polyneuropathy, small fiber neuropathy along with cardiac autonomic neuropathy.
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4 Reactions