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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Debbie | @dbeshears1 | Aug 12, 2023

In reply to @pacer3702 "Some antibiotics used to treat UTIs are neurotoxic. Do you think that could have caused your..." + (show)

Definitely No to the antibiotics being the cause. My weakness and inability to walk and seeing blood in urine (infection) was well in progress as I was hospitalized and took my last step/fall. Though the antibiotics may not have improved my neuropathy in progress at that point, it definitely wasn’t the cause. I will say that now that I have PN, I don’t like the feeling I get when I’m prescribed antibiotics; I feel they make me feel weaker, and always ask for the least “neuro-toxic”. They (medical journals) are backing off the “take all of the antibiotics, even if you feel better” rule, and while I am not recommending this to anyone, I generally do not finish all of them if I feel it’s affecting my PN (provided I feel the antibiotics have done their intended work), because sometimes I feel like it takes a week or two for my legs to get back to “normal for me”, and it’s scary.

jfn | @jfn | Aug 13, 2023

I have IVig treatments to help with a bad reaction to chemotherapy. I also have neuropathy and trigeminal neuralgia, etc... I think it helps my neuropathy, but it is not like a pill it needs to build up. My neuropathy did not feel better over night, it also has not become worse either. I have my moments of idiocy when I do something that will aggrevate the PN, and for the most part I can calm it down. Not cure it, just back to where it was.

minfromtexas | @minfromtexas | Aug 14, 2023

seanywonton I have the same diagnosis as you and I had been receiving IVIG treatments for 2 years. Yes, they did help me, but this year Medicare decided that the treatments are not warranted for my specific condition. Despite 2 appeals from my doctor and a letter of medical necessity, I have been denied future treatments. My best hope is that perhaps next year Medicare may reconsider....or I could win the lottery!! I have a Spinal Cord Stimulator which has helped and we've tried all kinds of meds, each with its own negative side effects. At this point I have discontinued all of the drugs. Ain't nothin' free!! So, for now I find that exercise helps the most for dealing with leg cramps and keeping my mind busy helps with the rest. Arghhhhh, whoda thought we'd ever have to deal with this condition?

stallen | @stallen | Aug 15, 2023

Hi…My neurologist basically just said I have neuropathy…but it did show on nerve conduction testing so it must be large fiber. I also have some autonomic involvement. I’m curious how yours started and has progressed ( symptoms, time frame etc). I haven’t been told a cause but have pre diabetes and high blood pressure. I’ve had it for 6+ years now ( and I presume much longer before it became noticeable). Mine seems to keep slowly progressing. I have muscle aches and pains, some foot soreness, fatigue, balance issues and some tremors. (And anxiety). I’m 60 yrs old.

harley22 | @harley22 | Aug 16, 2023

In reply to @stallen "Hi…My neurologist basically just said I have neuropathy…but it did show on nerve conduction testing so..." + (show)

Me also, told that I have neuropathy and CIDP, cause unknown.

stallen | @stallen | Aug 16, 2023

In reply to @harley22 "Me also, told that I have neuropathy and CIDP, cause unknown." + (show)

How did they diagnose the CIDP? Did it take quite a while? Wondering if at first they just said you had peripheral neuropathy?

harley22 | @harley22 | Aug 17, 2023

This has been going on for 11 yrs now, and I forget sometimes what the timeline results have been.
I started with numbness and tingling in my feet and having numb lips 11 yrs go.
As the years progressed I developed more symptoms throughout my body, and was to 6-7 neurologists.
The usual testing of brain mris and EMGs were done along the way.
MS was ruled out as my brain scans were neg,
I would say within the past 3 yrs, I was seen at The Undiagnosed Disease center which is in Bethesda Maryland and part of the NIH.
After 5 days of extensive testing, more MRIs,spinal taps, EMGs, bloodwork etc, it was them that gave me the CIDP diagnosis, and cause unknown.
Is it autoimmune, was it caused by something I had been exposed to like a virus, or was it genetic.
I knew there was a possibility and a 30% chance I would get a definite diagnosis from them, but I gave it a shot.
They told me Iwas a very unique case, as some of the other docs I saw in the past said.
Even at UPenn Med center, they couldn’t help me.

stallen | @stallen | Aug 17, 2023

In reply to @harley22 "This has been going on for 11 yrs now, and I forget sometimes what the timeline..." + (show)

Thank you for taking the time to respond to me. It sounds like you’ve been examined at the best facilities. As I mentioned it’s been 6 yrs for me and I feel I’m slowly deteriorating…I still exercise…stationary bike for 20 min …2-3 mile walk most days…but I get fatigued throughout the day. Probably the worst part is my balance deteriorating.
I think I’m getting agoraphobic going out because I don’t feel comfortable. How’s your current status? Are you still able to get around and do things ok? Btw…do you have autonomic involvement (I do)

harley22 | @harley22 | Aug 17, 2023

I also have balance issues, I’m like a weenie, can’t feel my feet to grip the bottom of what I’m standing on.
I take a walkerwith me when I go out for security purposes.
The cane isn’t enough anymore, and even the slightest ramp is hard for me to maneuver.
Thank god I have hand controls in my car,otherwise I wouldn’t be going,anywhere.
My poor husband will help me, but I see he’s getting tired of it also.
I have bowel and bladder issues also, so I need to make sure I have restrooms within reach.
I’m sure the neuropathy has something to do with the loss of feeling in both areas.
I’m able to get around slowly, and I’m fearful of falling, but I do go out when I have to.
I must stay it’s very exhausting for me to even go to the store lately, just getting in and out of the car exhausts me lately.
I live near the beach but haven’t been there in over a year because I can’t walk on the sand,or go in the ocean,so what’s the point.
I wish I had moved before I became so handicapped.
In the pst year or so, my right hand has been getting more numb, affecting my ability to write, hold things, pick things up,etc.
I don’t know what I’ll do if it goes to my left hand.
What autonomic symptoms do you have?

stallen | @stallen | Aug 17, 2023

I’m sorry for what you are going through…the word I keep coming up with is cruel. I’ve only been to one neurologist…my family has encouraged me to go for another opinion…I just don’t read where there’s really any solutions regardless…plus I have wicked anxiety when I set foot in a dr office. I think my autonomic issues pertain mainly to orthostatic hypertension. I wonder if I have CIDP but I think one of the symptoms is loss of reflexes…which I think I still have. Did you lose your reflexes in legs?