1. < Neuropathy

Questions on IVIg treatment for what I have: Axonal sensory-motor

Posted by seanywonton @seanywonton, Aug 9, 2023

Howdy. My SFN diagnosis was recently upgraded to "axonal sensory-motor peripheral neuropathy". Basically, it's no longer just small fibers that are effected. Some larger nerves are impeded or dead, and that is showing up on an EMG.

And it's not actually peripheral. I feel pins, needles, and numbness it all over my core, pelvis, and head too. I have really spastic muscles that hate to be stretched, and they fatiuge quite quickly. I also have a litany of trigger points and muscle knots all over.

I still don't know what this is from, but it sounds like at this point it's either hereditary, or autoimmune. I am still working on getting some lab work done for some things in both those departments. Maybe we will find something conclusive as to the cause soon...or not.

In the mean time, it was suggested that I try IVIg. I figure I have nothing to lose, but it does seem this treatment is more helpful for autoimmune neuropathy.

Any thoughts here? The lady I spoke to from the company that administers the injections was saying that for autoimmune neuropathies, you usually see damage more in the myelin sheath. And axonal points more to hereditary. She's not a doctor, but it sounds like she has seen a lot of people like me, and knows about the subject.

Anyway, like I said, I'm most likely going to try IVIg either way. But just wondering what observations or thoughts you all have on IVIg, or the clues about what I have and what it might actually be from.

Thanks for any ideas.

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roslyn2314 | @roslyn2314 | Aug 10, 2023

I too am up for IVIG treatment for CIDP...I was keen to read responses to your comments and questions as I am looking for some answers as well.
No good trying to ask a Neurologist They are so heavily booked until 2024..

REPLY
1 reply
Debbie | @dbeshears1 | Aug 10, 2023

I’m glad you’re given it as an option for possible hope of relief or improvement? That is, only if there are reasonable assurances along with little risk of adverse affects and it is affordable. I actually inquired about it as I was willing to try “anything” but my doctor flat out said that he was unable to prescribe it for my type of PN. I think that now that you’re given a choice, you are being very wise in reaching out to folks here who have actual experience in receiving the treatment. I hope you’ll share your experience. A question I have for you / is your doctor now saying you have BOTH SFN and Axonal Sensorimotor Neuropathy, the latter of which was confirmed by EMG? How did they make the original diagnosis of SFN?

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1 reply
casey1329 | @casey1329 | Aug 10, 2023

Ok, here goes...my husband after seeing 4 neurologist was given the diagnosis of Distal axonal sensory poly neuropathy". Neurologist #2 had him taking IVIG infusions for a CIDP. It did not help him. Neuro # 1said he had Parkinsons and had him taking pills for it. Did nothing for him. My husband never had pins & needles but weakness in his legs, was falling a lot and general fatigue and his inflammation markers were very high. Through extensive google research I concluded that he was suffering the effects of alcohol abuse and leaky gut. Doctor # 4, from Ireland, finally listened and agreed. Treatment was to stop drinking, not easy, but it was done. Now a year later he is just about 100% better. Funny thing is all 4 doctors did the same EMG tests and was told how much he drank. I hope in same small way this was helpful. I wish you all the best !

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1 reply
seanywonton | @seanywonton | Aug 11, 2023
In reply to @roslyn2314 "I too am up for IVIG treatment for CIDP...I was keen to read responses to your..." + (show)
@roslyn2314

I too am up for IVIG treatment for CIDP...I was keen to read responses to your comments and questions as I am looking for some answers as well.
No good trying to ask a Neurologist They are so heavily booked until 2024..

Jump to this post

Well the good thing is, I'm pretty sure it's clinically proven to treat CIDP. I'm not so sure if it is for what I have. I think it depends on the underlying cause.

REPLY
seanywonton | @seanywonton | Aug 11, 2023
In reply to @dbeshears1 "I’m glad you’re given it as an option for possible hope of relief or improvement? That..." + (show)
@dbeshears1

I’m glad you’re given it as an option for possible hope of relief or improvement? That is, only if there are reasonable assurances along with little risk of adverse affects and it is affordable. I actually inquired about it as I was willing to try “anything” but my doctor flat out said that he was unable to prescribe it for my type of PN. I think that now that you’re given a choice, you are being very wise in reaching out to folks here who have actual experience in receiving the treatment. I hope you’ll share your experience. A question I have for you / is your doctor now saying you have BOTH SFN and Axonal Sensorimotor Neuropathy, the latter of which was confirmed by EMG? How did they make the original diagnosis of SFN?

Jump to this post

I guess what he is saying is, my small fiber neuropathy is no longer just small fiber. It's small and large, because it's showing up on an EMG, and that can only detect large.

What is your type of neuropathy and the cause, if you don't mind sharing?

REPLY
1 reply
seanywonton | @seanywonton | Aug 11, 2023
In reply to @casey1329 "Ok, here goes...my husband after seeing 4 neurologist was given the diagnosis of Distal axonal sensory..." + (show)
@casey1329

Ok, here goes...my husband after seeing 4 neurologist was given the diagnosis of Distal axonal sensory poly neuropathy". Neurologist #2 had him taking IVIG infusions for a CIDP. It did not help him. Neuro # 1said he had Parkinsons and had him taking pills for it. Did nothing for him. My husband never had pins & needles but weakness in his legs, was falling a lot and general fatigue and his inflammation markers were very high. Through extensive google research I concluded that he was suffering the effects of alcohol abuse and leaky gut. Doctor # 4, from Ireland, finally listened and agreed. Treatment was to stop drinking, not easy, but it was done. Now a year later he is just about 100% better. Funny thing is all 4 doctors did the same EMG tests and was told how much he drank. I hope in same small way this was helpful. I wish you all the best !

Jump to this post

Wow, well that is difficult, but a small sacrifice to feel 100% better. Just curious, but how much do you think he was drinking per day, or per week, or whatever?

REPLY
1 reply
sfnmcashatsebv | @sfnmcashatsebv | Aug 11, 2023

hi Im a patient with SFN and a dr told me it works for patients with sfn/mcas/hats..other neurologist told me it has not been effective for just neuropathy. Do you know what is causing your neuropathy? A dr told me mine is caused by a virus. So Im trying to find out what virus is causing it. Hope you feel better

REPLY
Debbie | @dbeshears1 | Aug 11, 2023
In reply to @seanywonton "I guess what he is saying is, my small fiber neuropathy is no longer just small..." + (show)
@seanywonton

I guess what he is saying is, my small fiber neuropathy is no longer just small fiber. It's small and large, because it's showing up on an EMG, and that can only detect large.

What is your type of neuropathy and the cause, if you don't mind sharing?

Jump to this post

Idiopathic Axonal Sensorimotor PN (though on any given day I feel I’ve left out a word in that description) . It has been confirmed by EMG. Though it came on suddenly (good health to weakness & wheelchair bound in 10 days), it was accompanied with a kidney/UTI infection but they said Guillain Barre was negative. They say it’s “possible” I could have some variant of it, but basically everything they knew how to test came up negative - hence Idiopathic. Good luck with your IVIG if you choose that option, and I hope you’re proactive with managing your symptoms. PT got me out of my wheelchair after 6 months and I’ve maintained for over 6 years and am so grateful for that!

REPLY
1 reply
casey1329 | @casey1329 | Aug 11, 2023
In reply to @seanywonton "Wow, well that is difficult, but a small sacrifice to feel 100% better. Just curious, but..." + (show)
@seanywonton

Wow, well that is difficult, but a small sacrifice to feel 100% better. Just curious, but how much do you think he was drinking per day, or per week, or whatever?

Jump to this post

He would start drinking whiskey around noon and drink till he passed out at night. Maybe, 2 gallons a week.

REPLY
pacer3702 | @pacer3702 | Aug 12, 2023
In reply to @dbeshears1 "Idiopathic Axonal Sensorimotor PN (though on any given day I feel I’ve left out a word..." + (show)
@dbeshears1

Idiopathic Axonal Sensorimotor PN (though on any given day I feel I’ve left out a word in that description) . It has been confirmed by EMG. Though it came on suddenly (good health to weakness & wheelchair bound in 10 days), it was accompanied with a kidney/UTI infection but they said Guillain Barre was negative. They say it’s “possible” I could have some variant of it, but basically everything they knew how to test came up negative - hence Idiopathic. Good luck with your IVIG if you choose that option, and I hope you’re proactive with managing your symptoms. PT got me out of my wheelchair after 6 months and I’ve maintained for over 6 years and am so grateful for that!

Jump to this post

Some antibiotics used to treat UTIs are neurotoxic. Do you think that could have caused your peripheral neuropathy?

REPLY
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