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Questions on IVIg treatment for what I have: Axonal sensory-motor
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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...yeah, for most of us there isn't a cure for these autoimmune diseases. So, it comes down to living with the symptoms. Does the cause really matter once you're in the middle of it? I've come to the conclusion that it doesn't. For me, now, its a mental game. Keeping myself distracted and looking forward. It's so hard letting go of the physicality of the past.
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3 ReactionsI think you’re right…
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2 ReactionsI have to agree with you!
Apparantly there’s no cure anyway, so we just have to treat and deal with the symptoms.
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2 ReactionsI have been diagnosed with an autoimmune large fiber axonal neuropathy of unknown cause since 2021. All other tests were negative, so this is a diagnosis of elimination of other factors. Because of its autoimmune nature, my neuropathy qualified for coverage for IVIG treatment. I have had it monthly since early 2022, with time out for an unrelated fracture. I have been back on IVIG treatment since early 2023. I have no myeline sheath involvement, and believe iVIG has helped increase strength and reduce pain, in conjunction with PT twice a week.
There is minimal pain with treatment, just finding a vein for infusion IV. It is daily for 5 days a month for about 3 hours. Benadryl is administered before to offset any allergies. I have had no adverse reactions, and hope to continue.
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3 ReactionsI just wanted to point out a couple things. I have a type of chronic demyelinating motor nerve disorder and have never been diagnosed with any type of autoimmune disease. The diagnosis my neurologist uses is chronic variable demyelinating polyridculitis I was fully worked up for genetic testing (very expensive) which were all negative I’m also prone to entrapment neuropathy like foot drop, brachial plexitis and carpal tunnel in each hand. I don’t believe the spokesperson you talked with knows the facts and I don’t you want you led astray. My demyelinating feature also includes nerve repair and for a long time my nerves could repair at a faster pace than the damage but that’s now stopped. I realized just today I can no longer balance on a single leg. You might want to research demyelinating neuropathy and followed by google scholar That will bring up peer reviewed studies and articles and is the best way to learn IMO. It’s helpful to have some level of medical knowledge but most articles are easy enough to read without
As regards to the IVig treatment. I drink about 120 ounces the day before, day of and day after. I am prone to migraines and IVig if I do not do the above is just pure pain.
I also do cranial sacral therapy either before or after, walk around, and just move as much as possible. My insurance dictates I have at home, so I can do more than when it was in an infusion center. To me, the IVig takes a few months to start feeling any improvement or lack of decline, it is not instant gratification.
I was diagnosed with Idiopathic Axonal sensorimotor polyneuropathy 4-1/2 years ago. My doctor offered no treatment or advise. I'm now struggling to walk more than a few feet without severe leg and hip fatigue, burning, weakness, etc. I thought this was due to my back issues but recent tests show no serious issues. So back to the Neurologist with my complaints... New EMG done yesterday and waiting for the results.
I also have Psoriatic arthritis, Venous Insufficiency, Lymphedema, history of blood clots and bilateral pulmonary embolism (this past Jan), and possibly Ehlers Danlos Syndrome.
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1 ReactionWelcome @smslee, Sorry to hear that your doctor has not offered or suggested any treatment to help with your symptoms. I also have trouble walking very far with my idiopathic small fiber PN, lymphedema in my legs and a few other ailments. My lymphedema is controlled fairly well with knee high compression socks and I only have numbness with my neuropathy so can't imagine adding the burning into my symptoms. I'm not sure your symptoms are all due to the neuropathy since both lymphedema and venous insufficiency may also be part of the problem. Here's some information on both conditions that might explain it better.
"Chronic venous insufficiency signs and symptoms include: Achy or tired legs. Burning, tingling or “pins and needles” sensation in your legs. Cramping in your legs at night."
--- Chronic Venous Insufficiency (CVI) - Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/16872-chronic-venous-insufficiency-cvi.
"Decreased physical function, dyspnea, and fatigue occurs frequently in patients with lower limb lymphedema. Nearly a third of patients with lower limb lymphedema experienced three of more physical symptoms,17 and these symptoms are exacerbated by prolonged standing, heat, and walking."
--- Symptom Frequency, Intensity, and Distress in Patients with Lower Limb Lymphedema:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4926205/.
Can you provide an update when you get the results of your EMG?
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2 ReactionsThank you for your helpful response and information. I'm sure there's s combo of symptoms that I'm experiencing and throw restless legs syndrome into the mix and every night is a dance party 🦵🦵🦵🤣 .
I will certainly post an update once I get the results. Thank you 🩵
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1 ReactionI 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.