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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

budjo611 | @budjo611 | Sep 3, 2023
In reply to @suetex "I have Sjogren's small fiber neuropathy manafesting as sensory ataxia. For over two years now no..." + (show)
@suetex

I have Sjogren's small fiber neuropathy manafesting as sensory ataxia. For over two years now no one seemed to know what I had and I have nearly lost the use of my legs. Finally, thanks to a new rheumatologist, I have a diagnosis and a treatment, now I need to find programs that help pay for it. Anyone who has tried it please share your experience.

Jump to this post

I also have SFN. Took 3 years to diagnose. It also took 3 neurologists to figure it out. None even suggested the treatment. I’m seeing Dr. Oaklander at Mass General Hospital. Unfortunately, not until January. She is a proponent of IVIG. At least she was in one of her lectures I listened to. I’m also looking for anyone who has experienced this treatment. I’ve tried literally everything!!!! So I’m skeptical. Can only hope I’m wrong.
GOOD LUCK!!!

REPLY
2 replies
sfnmcashatsebv | @sfnmcashatsebv | Sep 3, 2023
In reply to @budjo611 "I also have SFN. Took 3 years to diagnose. It also took 3 neurologists to figure..." + (show)
@budjo611

I also have SFN. Took 3 years to diagnose. It also took 3 neurologists to figure it out. None even suggested the treatment. I’m seeing Dr. Oaklander at Mass General Hospital. Unfortunately, not until January. She is a proponent of IVIG. At least she was in one of her lectures I listened to. I’m also looking for anyone who has experienced this treatment. I’ve tried literally everything!!!! So I’m skeptical. Can only hope I’m wrong.
GOOD LUCK!!!

Jump to this post

I have also been trying to figure out sudden onset of nerve pain that has persisted for 3 years this month. Started about 9 months after sars-cov infection and has manifested into muscle losss and loose skin, i bruise easily, skin tears, ive lost a lot of muscle mass , but gained weight, from abdominal bloating and organ inflammation liver, spleen, high ebv antigens, along with elevated trypatse, along with loss of smell which is very mionor issue for me for last 3 1/2 years. I have seen about 6 neurologist now, had 4 emg and another scheduled in oct. Have small fiber neuropathy but doesnt get any treatement. Hopeing also to try IVIG, dr just prescribed Mestinon for nerve pain , as indicated for treatment of hereditary alpha tryptesemia (genetic allergy thanks again to covid) EMR record errors are making treatment even more difficult. These symptoms are all related and they are all a progression of long covid, Virus is still damaging my body and i dont know why it wont go away. I hope reaserches can find a way to calm down the remanats of covid causing all this. The neurological impacts of covid are extremly painful 3 years in.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 4, 2023
In reply to @suetex "I have Sjogren's small fiber neuropathy manafesting as sensory ataxia. For over two years now no..." + (show)
@suetex

I have Sjogren's small fiber neuropathy manafesting as sensory ataxia. For over two years now no one seemed to know what I had and I have nearly lost the use of my legs. Finally, thanks to a new rheumatologist, I have a diagnosis and a treatment, now I need to find programs that help pay for it. Anyone who has tried it please share your experience.

Jump to this post

@suetex, I moved your question about IVIG treatment to this existing discussion so you can read previous posts and connect with other members like you easily:
- Questions on IVIg treatment for what I have: Axonal sensory-motor: https://connect.mayoclinic.org/discussion/questions-on-ivig-treatment-for-what-i-have-axonal-sensory-motor/

You may also be interested in this related discussion:
- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/

REPLY
suetex | @suetex | Sep 4, 2023
In reply to @budjo611 "I also have SFN. Took 3 years to diagnose. It also took 3 neurologists to figure..." + (show)
@budjo611

I also have SFN. Took 3 years to diagnose. It also took 3 neurologists to figure it out. None even suggested the treatment. I’m seeing Dr. Oaklander at Mass General Hospital. Unfortunately, not until January. She is a proponent of IVIG. At least she was in one of her lectures I listened to. I’m also looking for anyone who has experienced this treatment. I’ve tried literally everything!!!! So I’m skeptical. Can only hope I’m wrong.
GOOD LUCK!!!

Jump to this post

I'll let you know how it goes. I actually had to do my own diagnosing and find my own treatment. But after reading about it, my neurologist agreed with me. I could see a wheelchair in my future easily so I appealed to him that way.

REPLY
1 reply
budjo611 | @budjo611 | Sep 4, 2023
In reply to @suetex "I'll let you know how it goes. I actually had to do my own diagnosing and..." + (show)
@suetex

I'll let you know how it goes. I actually had to do my own diagnosing and find my own treatment. But after reading about it, my neurologist agreed with me. I could see a wheelchair in my future easily so I appealed to him that way.

Jump to this post

Thanks. But no thanks!!
I don’t give up that easily!!

REPLY
suetex | @suetex | Sep 4, 2023

No, you can't give up. I'll race you......(Iol)

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jfn | @jfn | Sep 5, 2023

Hi.

I have IVig for other issues, however I have neuropathy. I actively work to negate the progression with as many activities that I can. Please realize that there might not be an improvement immediately, it could take several treatments. I hydrate at twice my normal rate (as much as possible) the day before, the day of, and the day after. I have the therapy at home so I move as much as possible. Headaches can be a side effect, so talk to your neurologist about that. I do all of the above plus cranial sacral therapy for my IVig headaches. I hope all goes well!

JFN

REPLY
suetex | @suetex | Sep 5, 2023

Thank you for your input. I am trying to keep expectations low but any improvement to my balance will be a plus. My starting session is 5 days in a row so they must have to give a lot of gamma globulin. The hydration the day before is a good idea. I'll try that as well as the antihistamine as my dr suggested I'll let every know how it went and what works.

REPLY
bettyg81pain | @bettyg81pain | Sep 11, 2023
In reply to @sfnmcashatsebv "I have also been trying to figure out sudden onset of nerve pain that has persisted..." + (show)
@sfnmcashatsebv

I have also been trying to figure out sudden onset of nerve pain that has persisted for 3 years this month. Started about 9 months after sars-cov infection and has manifested into muscle losss and loose skin, i bruise easily, skin tears, ive lost a lot of muscle mass , but gained weight, from abdominal bloating and organ inflammation liver, spleen, high ebv antigens, along with elevated trypatse, along with loss of smell which is very mionor issue for me for last 3 1/2 years. I have seen about 6 neurologist now, had 4 emg and another scheduled in oct. Have small fiber neuropathy but doesnt get any treatement. Hopeing also to try IVIG, dr just prescribed Mestinon for nerve pain , as indicated for treatment of hereditary alpha tryptesemia (genetic allergy thanks again to covid) EMR record errors are making treatment even more difficult. These symptoms are all related and they are all a progression of long covid, Virus is still damaging my body and i dont know why it wont go away. I hope reaserches can find a way to calm down the remanats of covid causing all this. The neurological impacts of covid are extremly painful 3 years in.

Jump to this post

I developed it during covid also!!!

REPLY
suetex | @suetex | Sep 11, 2023

To Betty81pain: How awful for you! I can't imagine what that was like. I will give a report as I learn more about the IvIg experience.
IvIg Day 1: Pushed water the day before and started generic Alegra (antihistamine) as suggested. Found out that they (the fusion center affiliated with Methodist hospital) give a contail of drugs to ward off side effects and they work for the most part but I think some individualization might be advised. First they give you 2 reg. tylonal to take. Ok so far. The in the IV, they give Fantomine (Pepcid) an H2 stomach acid blocker, shouldn't give a problem. But next the give a steroid and I can't figure out how big a dose it might of been from the paper work they gave me. Thing is the muscle pain in my legs is much better and I bet it is from the steroid which likely means the pain is my PMR kicking up, not the Sjogren's. I can't do steroids because of my Glaucoma. Also, they gave benedril in spite of me telling them I was on Allegra. Which isn't exactly a problem but overkill, I would say. All in all, I fared well and no meaningful side effects. But we will have a talk about steroids tomorrow.

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