@eah2 Is your idiopathic PN specifically SFN? I ask because mine is not SFN, and I notice that the study done was on SFN specific in the other article.
After a long diagnostic process, 2 neurologists concluded that My polyneuropathy was probably an autoimmune reaction to either spinal fusion surgery, infection unrelated to the surgery, medication or anesthesia, or some unknown factor. I had been screened out of other antibodies, and am not diabetic nor did I have chemo. That meant I could be covered by Medicare Advantage for iVIG treatments. Over the last year, they have added to my strength and range of motion. I am resuming them after a fall and fractures which have healed. I have skepticism about the cited Dutch study with only 60 participants, done from 2016 to 2018. I think any study needs a wider population of subjects. At my neurologist’s suggestion, and my own good results earlier, I am continuing the iVIG treatments. With an antihistamine before the immunoglobulin IV insertion, I have had no allergic reactions.
If approved by a neurologist, I recommend iVIG treatment to reduce inflammation of the nerves.
@eah2 Is your idiopathic PN specifically SFN? I ask because mine is not SFN, and I notice that the study done was on SFN specific in the other article.
Hi Debbie,
At this my point studies indicate nld pn small fiber not cidp. I know ivig not yet approved for what I have but there are clinical trials for ppl if autoantibodies are present and everything else is ruled out.
After a long diagnostic process, 2 neurologists concluded that My polyneuropathy was probably an autoimmune reaction to either spinal fusion surgery, infection unrelated to the surgery, medication or anesthesia, or some unknown factor. I had been screened out of other antibodies, and am not diabetic nor did I have chemo. That meant I could be covered by Medicare Advantage for iVIG treatments. Over the last year, they have added to my strength and range of motion. I am resuming them after a fall and fractures which have healed. I have skepticism about the cited Dutch study with only 60 participants, done from 2016 to 2018. I think any study needs a wider population of subjects. At my neurologist’s suggestion, and my own good results earlier, I am continuing the iVIG treatments. With an antihistamine before the immunoglobulin IV insertion, I have had no allergic reactions.
If approved by a neurologist, I recommend iVIG treatment to reduce inflammation of the nerves.
Hi @efgh1020
I am having an IVig in 30 minutes so I will say more later. I have neuropathy, I do so many things to relieve the symptoms, if you would like that list, I can post it again. My neuropathy increased in severity after severe allergy reactions, just to add to the 'could it be autoimmune' even though I have had chemo.
Thanks for this reply, and good luck with your IVIG treatment. It has also reduced my pain. However, I could use that list again, and it can also help others, whenever you can post it again.
For the first time in a while, my infusion went well, and my headache that follows is bearable (cranial sacral therapy). What I do: eat less sugar, I can feel it some days - I will choose to eat something that sets the nerves in my feet into a rage, such as drinking 2 sodas. One soda with plenty of water at the same time, not so bad. I have been on an absolute no sugar diet for something else and that did not seem to help the neuropathy, or the issue I did it for. I do a 'Happy Feet' yoga with Sally McNally (I can not do everything in the video, but I try, a foot rub every night and every morning- 5 minutes, other exercise is also done also, core, weights, stability, and walking (minimum of 10,000 steps a day with my Berners). I pamper my feet in Merrell fur lined clogs, if I am at home, the softness of the lining... I take meds for my trigeminal neuralgia (muscle relaxants) so they may contribute too. I am trying my best to have happy gliding nerves, that are in a positive growth state. In the past cold laser therapy was done and my feet responded well to the treatment, the neuropathy was almost gone. I had an allergic reaction to something and the neuropathy came back.
For the first time in a while, my infusion went well, and my headache that follows is bearable (cranial sacral therapy). What I do: eat less sugar, I can feel it some days - I will choose to eat something that sets the nerves in my feet into a rage, such as drinking 2 sodas. One soda with plenty of water at the same time, not so bad. I have been on an absolute no sugar diet for something else and that did not seem to help the neuropathy, or the issue I did it for. I do a 'Happy Feet' yoga with Sally McNally (I can not do everything in the video, but I try, a foot rub every night and every morning- 5 minutes, other exercise is also done also, core, weights, stability, and walking (minimum of 10,000 steps a day with my Berners). I pamper my feet in Merrell fur lined clogs, if I am at home, the softness of the lining... I take meds for my trigeminal neuralgia (muscle relaxants) so they may contribute too. I am trying my best to have happy gliding nerves, that are in a positive growth state. In the past cold laser therapy was done and my feet responded well to the treatment, the neuropathy was almost gone. I had an allergic reaction to something and the neuropathy came back.
My neurologist and a 2nd opinion neurologist brought in by her diagnosed the cause of my neuropathy as an autoimmune reaction to either spinal fusion surgery for stenosis, medication, anesthesia, or infections unrelated to the surgery. The autoimmune diagnosis opened up a treatment of IVIG with immunoglobulin to combat inflammation in the nerves. It led over time to less pain, greater strength and range of motion—all in combination with simultaneous physical therapy.
For the first time in a while, my infusion went well, and my headache that follows is bearable (cranial sacral therapy). What I do: eat less sugar, I can feel it some days - I will choose to eat something that sets the nerves in my feet into a rage, such as drinking 2 sodas. One soda with plenty of water at the same time, not so bad. I have been on an absolute no sugar diet for something else and that did not seem to help the neuropathy, or the issue I did it for. I do a 'Happy Feet' yoga with Sally McNally (I can not do everything in the video, but I try, a foot rub every night and every morning- 5 minutes, other exercise is also done also, core, weights, stability, and walking (minimum of 10,000 steps a day with my Berners). I pamper my feet in Merrell fur lined clogs, if I am at home, the softness of the lining... I take meds for my trigeminal neuralgia (muscle relaxants) so they may contribute too. I am trying my best to have happy gliding nerves, that are in a positive growth state. In the past cold laser therapy was done and my feet responded well to the treatment, the neuropathy was almost gone. I had an allergic reaction to something and the neuropathy came back.
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@eah2 Is your idiopathic PN specifically SFN? I ask because mine is not SFN, and I notice that the study done was on SFN specific in the other article.
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1 ReactionAfter a long diagnostic process, 2 neurologists concluded that My polyneuropathy was probably an autoimmune reaction to either spinal fusion surgery, infection unrelated to the surgery, medication or anesthesia, or some unknown factor. I had been screened out of other antibodies, and am not diabetic nor did I have chemo. That meant I could be covered by Medicare Advantage for iVIG treatments. Over the last year, they have added to my strength and range of motion. I am resuming them after a fall and fractures which have healed. I have skepticism about the cited Dutch study with only 60 participants, done from 2016 to 2018. I think any study needs a wider population of subjects. At my neurologist’s suggestion, and my own good results earlier, I am continuing the iVIG treatments. With an antihistamine before the immunoglobulin IV insertion, I have had no allergic reactions.
If approved by a neurologist, I recommend iVIG treatment to reduce inflammation of the nerves.
-
Like -
Helpful -
Hug
2 ReactionsHi Debbie,
At this my point studies indicate nld pn small fiber not cidp. I know ivig not yet approved for what I have but there are clinical trials for ppl if autoantibodies are present and everything else is ruled out.
-
Like -
Helpful -
Hug
1 ReactionHi @efgh1020
I am having an IVig in 30 minutes so I will say more later. I have neuropathy, I do so many things to relieve the symptoms, if you would like that list, I can post it again. My neuropathy increased in severity after severe allergy reactions, just to add to the 'could it be autoimmune' even though I have had chemo.
-
Like -
Helpful -
Hug
2 ReactionsThanks for this reply, and good luck with your IVIG treatment. It has also reduced my pain. However, I could use that list again, and it can also help others, whenever you can post it again.
Hi efgh1020,
For the first time in a while, my infusion went well, and my headache that follows is bearable (cranial sacral therapy). What I do: eat less sugar, I can feel it some days - I will choose to eat something that sets the nerves in my feet into a rage, such as drinking 2 sodas. One soda with plenty of water at the same time, not so bad. I have been on an absolute no sugar diet for something else and that did not seem to help the neuropathy, or the issue I did it for. I do a 'Happy Feet' yoga with Sally McNally (I can not do everything in the video, but I try, a foot rub every night and every morning- 5 minutes, other exercise is also done also, core, weights, stability, and walking (minimum of 10,000 steps a day with my Berners). I pamper my feet in Merrell fur lined clogs, if I am at home, the softness of the lining... I take meds for my trigeminal neuralgia (muscle relaxants) so they may contribute too. I am trying my best to have happy gliding nerves, that are in a positive growth state. In the past cold laser therapy was done and my feet responded well to the treatment, the neuropathy was almost gone. I had an allergic reaction to something and the neuropathy came back.
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1 ReactionWhich diagnosis recommends Ivig infusions?
My infusion is not for neuropathy, other issues resulting from chemotherapy.
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1 ReactionMy neurologist and a 2nd opinion neurologist brought in by her diagnosed the cause of my neuropathy as an autoimmune reaction to either spinal fusion surgery for stenosis, medication, anesthesia, or infections unrelated to the surgery. The autoimmune diagnosis opened up a treatment of IVIG with immunoglobulin to combat inflammation in the nerves. It led over time to less pain, greater strength and range of motion—all in combination with simultaneous physical therapy.
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Like -
Helpful -
Hug
2 ReactionsThank you for these suggestions.