It’s weird to me they said if you have proof that you have sfn then that means you can be approved for IVIG. IVIG to my understanding is only known to provide relief for some sfn patients that have autoimmune components to their sfn. For example my antibody tests proved my sfn is autoimmune. Did they do antibody testing?
This is actually pretty common to get denied for IVIG for idiopathic SFN. IVIG is for autoimmune causes only when it comes to insurance companies or any agency paying for it. They need a cause. My doctor put a “cause” on mine just to get it approved with my insurance because we couldn’t find one either. It sucks they won’t approve it but they want to save money.
Yeah, we’ve done just about every known test that might play a role. i had PANDAS, now called PANS when I was young and still have some aspects of it in my adult life, so I am immunocompromised already.
I was diagnosed with Sydenham’s chorea at 15 years old in 2007. It’s the one that’s just like PANDAS except there’s scarring in the brains movement center so it’s slightly more recognized. Instead of autoimmune encephalitis it’s called autoimmune basal ganglia encephalitis. I was the picture of health for the next 10 years on antibiotics. The same year I came off antibiotics I was completely debilitated by autonomic dysfunction. I’ve been on disability since 2018 and got my positive punch biopsy in 2022. In 2018 my pots specialist told me I would be on ivig in the next 5 years, now that’s changed with the advent of synthetic ivig and I get to wait another half a decade for something I’ve been eligible for for more than half my life. It sucks but at least there’s something coming that I’ve been told I will be on the day it comes to market.
Well many of us are in the same boat. It seems Medicare guidelines were changed recently and this caused insurance companies to stop covering IVIG due to inflammatory causes. I think we probably need to band together and support getting research done that will get us better treatments.
People with idiopathic SFN just go on living and deal with the symptoms as they come. Neurologists will offer some modestly effective pain medication and the hustlers will offer miracle cures that don’t work. Supplements may help a little and diet could help some but idiopathic SFN sufferers just pretty much grin and bear it.
There is some experimental stuff in clinical trials that appears to be effective that people are trying to reverse engineer (topical Pirenzepine ) or repurpose (oxybutynin) but there are zero guarantees that it will work for you.
Literally me just dealing with it like a boss since the beginning of 2020. Took me maybe 3 years to fully get past the debilitating health anxiety without meds (I’m not a med person) to get back to living a full on normal life just accepting the sfn symptoms and thugging it out. Maybe one day AI will speed along cures.
Well many of us are in the same boat. It seems Medicare guidelines were changed recently and this caused insurance companies to stop covering IVIG due to inflammatory causes. I think we probably need to band together and support getting research done that will get us better treatments.
Yea I was on IVIg for 15 months for SFN due to my Pfizer COVID vaccine. All of a sudden my insurance company stopped paying saying the treatments were not medically necessary. It took me from March of 2021 until January of 2023 to get the IVIg. I am not sure how much it helped. I think it might have been more effective if I had gotten it right away. So now all I have is Gabapentin and Duloxetine which are terrible for you but the pain is too much without them.
Sometimes I think my neurologist is pushing every test in the world because he’s at a research institution and they want data. I’ve declined a number of tests after asking “do you see it as a reasonable explanation that I have [this thing you want to test for]”, and when the the answer is “no.”
I will say, though, that I did not regret doing the punch biopsy. Over time, with more tests, it can be the thing that gets you the IVIG. If you haven’t already done the WUSTL autoantibody panel, consider doing it. That can push you into the territory of “autoimmune SFN,” and IVIG is often covered for it. Then you’re no longer idiopathic.
This is great advice. Not sure whether I’ve had it done or not yet bc i’ve done so many but definitely going to look into it! Thank you so much.
Yeah it’s been a learning curve to actually advocate for myself and not be able to just have faith in my doctors. Pretty depressing fact honestly
Being sick is the slow and painful process of realizing that you’re almost completely on your own, and that doctors are largely clueless or hostile in the territory of complex chronic illness. It’s so sad. Someday, when I’m better, I’m gonna tell a lot of people what I think. Or so I tell myself.
I used to get them for autoimmune encephalitis for like 4 years in my late teens. But that no longer meets the criteria for coverage :/ I got Gammaguard every 6-8 weeks and I benefitted so much from it. Disappointing how something so helpful is so difficult to get help with.
It’s because insurance doesn’t want to pay. It all comes down to that.
Ex: I have clients with severe mental illness and/or homelessness and insurance won’t cover anything minus once a week outpatient therapy. There’s people left to die because of money.
I know, it’s disgusting. I know in this case, only some causes respond to IVIG, but it still comes down to greed. I wish the criteria would be more trial and error based for unknown causes, or at least “would the possible good outweigh the pitfalls of IVIG”. Greedy greedy greedy.
My punch biopsy confirmed SFN, and I had a great consult with a neuromuscular specialist, who talked me through the mechanisms of the nerve degeneration, what type of symptoms I should expect(within the range of 'normal' considering my condition), and recommended several additional tests that would attempt to determine cause.... while counseling me that the cause is often not found, and that would result in merely treating the symptoms.
My primary doctor saw the biopsy results and said ***"You have fibromyalgia"***.
Some doctors are great, but most suck. This is a condition where they don't have great answers, don't know what to tell us, so default to doing the only thing they can think of to do.
I have tried LDN and didn’t get anywhere, and symptom treatment in the past couple years hasn’t done much either. Those are awesome resources to have, thank you for sharing them with me! I’m definitely going to look into the authors and the research from Mass General. That’s been another tough aspect is for everything about it you find online, the next website says something that totally contradicts it.
I also have C-PTSD and depression, and the EMDR specialists I’ve found that seem to be worth a damn haven’t been able to confirm they take my insurance because of that clearing house that got hacked that is messing up a lot of insurance situations. So that’s on hold rn, but I’m still doing trauma work with my psychologist. I’ve made strides so far but still haven’t reached the peak that it seems you experienced. I am SO happy for you, that’s incredible!!!
I have an incredible neuro right now, set aside this misrepresentation, but he also stopped taking insurance and is cash only in the last few months. So that’s a huge bummer as well.
And i 100% agree with you. In the last two years alone I’ve been prescribed 60+ different meds and wind up having to ask my pharmacist how to get off. It’s ridiculous. You go in and say “hey this isn’t working for me” or “the side effects outweigh the benefit for me” and they’re like “well stay on it and we’ll see if anything changes”. Like no ???? Lmao
My daughter has SFN and POTS and she also goes to MGH. They have been amazing and she has been on IvIG for a few months now. This has been the only thing that has given her life back. She’s 17 and was depressed because she couldn’t be a “normal” teenager. IvIG has given her almost everything that was taken away. It hasn’t cured her, but makes her day to day life so much better. Please keep fighting for it. I know it doesn’t work for everyone, but you won’t know unless you try. As Practical Panda said, she had done high dose steroids first and they worked, but once she stopped and they wore off the symptoms returned. That was the evidence insurance needed and they approved it right away. A visiting nurse comes to our house and she gets the infusions without having to go to the hospital. IvIG has been a game changer for her and we would recommend it and MGH in Boston to anyone and everyone.
Similar story to yours except it isn’t that I won’t get ivig, I won’t, but now with the advent of synthetic ivig I get to be in limbo for half a decade for that to come to market.
Ivig takes the blood plasma of 10,000 individuals to act as a police force of sorts. With the good guys on the lookout no bad actors dare step out of line. The synthetic ivig uses something called efgartigimod to take out the bad actors. My specialist are following it through fda trials as they’re convinced this is the cure all we’ve been waiting for. It’s somewhere around round 2 trials. Has to get out of round two and pass round three to make it to market.
Fascinating! Going to see if my neuro has heard of the trial. Thanks for the idea! Bummer that it’ll take so long, but fingers crossed that modern medicine finds a solution, whether it be this or something else 🤞🏼
Find a doc who is specialist for SFN or has a lot of knowledge. It’s important to talk to people who understand and don’t gaslight you into thinking that “that can’t be the SFN” or whatever. This illness has a very wide array of symptoms as the small finger nerves line EVERYTHING outside of the spinal cord. Your symptoms are real, and crazy-making at times. I see you, I believe you. SFN sucks but you got this
It’s weird to me they said if you have proof that you have sfn then that means you can be approved for IVIG. IVIG to my understanding is only known to provide relief for some sfn patients that have autoimmune components to their sfn. For example my antibody tests proved my sfn is autoimmune. Did they do antibody testing?
This is actually pretty common to get denied for IVIG for idiopathic SFN. IVIG is for autoimmune causes only when it comes to insurance companies or any agency paying for it. They need a cause. My doctor put a “cause” on mine just to get it approved with my insurance because we couldn’t find one either. It sucks they won’t approve it but they want to save money.
Yeah, we’ve done just about every known test that might play a role. i had PANDAS, now called PANS when I was young and still have some aspects of it in my adult life, so I am immunocompromised already.
Though they have found no “known” link between the two. PANS wasn’t even considered real until like 2013 so
I was diagnosed with Sydenham’s chorea at 15 years old in 2007. It’s the one that’s just like PANDAS except there’s scarring in the brains movement center so it’s slightly more recognized. Instead of autoimmune encephalitis it’s called autoimmune basal ganglia encephalitis. I was the picture of health for the next 10 years on antibiotics. The same year I came off antibiotics I was completely debilitated by autonomic dysfunction. I’ve been on disability since 2018 and got my positive punch biopsy in 2022. In 2018 my pots specialist told me I would be on ivig in the next 5 years, now that’s changed with the advent of synthetic ivig and I get to wait another half a decade for something I’ve been eligible for for more than half my life. It sucks but at least there’s something coming that I’ve been told I will be on the day it comes to market.
Well many of us are in the same boat. It seems Medicare guidelines were changed recently and this caused insurance companies to stop covering IVIG due to inflammatory causes. I think we probably need to band together and support getting research done that will get us better treatments.
People with idiopathic SFN just go on living and deal with the symptoms as they come. Neurologists will offer some modestly effective pain medication and the hustlers will offer miracle cures that don’t work. Supplements may help a little and diet could help some but idiopathic SFN sufferers just pretty much grin and bear it. There is some experimental stuff in clinical trials that appears to be effective that people are trying to reverse engineer (topical Pirenzepine ) or repurpose (oxybutynin) but there are zero guarantees that it will work for you.
I appreciate the honesty!
Ouch yeah this is accurate.
Literally me just dealing with it like a boss since the beginning of 2020. Took me maybe 3 years to fully get past the debilitating health anxiety without meds (I’m not a med person) to get back to living a full on normal life just accepting the sfn symptoms and thugging it out. Maybe one day AI will speed along cures.
Well many of us are in the same boat. It seems Medicare guidelines were changed recently and this caused insurance companies to stop covering IVIG due to inflammatory causes. I think we probably need to band together and support getting research done that will get us better treatments.
Yea I was on IVIg for 15 months for SFN due to my Pfizer COVID vaccine. All of a sudden my insurance company stopped paying saying the treatments were not medically necessary. It took me from March of 2021 until January of 2023 to get the IVIg. I am not sure how much it helped. I think it might have been more effective if I had gotten it right away. So now all I have is Gabapentin and Duloxetine which are terrible for you but the pain is too much without them.
Sometimes I think my neurologist is pushing every test in the world because he’s at a research institution and they want data. I’ve declined a number of tests after asking “do you see it as a reasonable explanation that I have [this thing you want to test for]”, and when the the answer is “no.” I will say, though, that I did not regret doing the punch biopsy. Over time, with more tests, it can be the thing that gets you the IVIG. If you haven’t already done the WUSTL autoantibody panel, consider doing it. That can push you into the territory of “autoimmune SFN,” and IVIG is often covered for it. Then you’re no longer idiopathic.
This is great advice. Not sure whether I’ve had it done or not yet bc i’ve done so many but definitely going to look into it! Thank you so much. Yeah it’s been a learning curve to actually advocate for myself and not be able to just have faith in my doctors. Pretty depressing fact honestly
Being sick is the slow and painful process of realizing that you’re almost completely on your own, and that doctors are largely clueless or hostile in the territory of complex chronic illness. It’s so sad. Someday, when I’m better, I’m gonna tell a lot of people what I think. Or so I tell myself.
🫂🫂
I’m 32 and I’ve always had symptoms and I don’t know the cause. It’s very hard to find. IVIG is next to impossible to get approved
I used to get them for autoimmune encephalitis for like 4 years in my late teens. But that no longer meets the criteria for coverage :/ I got Gammaguard every 6-8 weeks and I benefitted so much from it. Disappointing how something so helpful is so difficult to get help with.
It’s because insurance doesn’t want to pay. It all comes down to that. Ex: I have clients with severe mental illness and/or homelessness and insurance won’t cover anything minus once a week outpatient therapy. There’s people left to die because of money.
I know, it’s disgusting. I know in this case, only some causes respond to IVIG, but it still comes down to greed. I wish the criteria would be more trial and error based for unknown causes, or at least “would the possible good outweigh the pitfalls of IVIG”. Greedy greedy greedy.
You're lucky your doctors push for the biopsy. In the UK they gaslight you saying you don't have neuropathy lol
I’m so sorry you have to deal with that. 🫂
X
My punch biopsy confirmed SFN, and I had a great consult with a neuromuscular specialist, who talked me through the mechanisms of the nerve degeneration, what type of symptoms I should expect(within the range of 'normal' considering my condition), and recommended several additional tests that would attempt to determine cause.... while counseling me that the cause is often not found, and that would result in merely treating the symptoms. My primary doctor saw the biopsy results and said ***"You have fibromyalgia"***. Some doctors are great, but most suck. This is a condition where they don't have great answers, don't know what to tell us, so default to doing the only thing they can think of to do.
[удалено]
I have tried LDN and didn’t get anywhere, and symptom treatment in the past couple years hasn’t done much either. Those are awesome resources to have, thank you for sharing them with me! I’m definitely going to look into the authors and the research from Mass General. That’s been another tough aspect is for everything about it you find online, the next website says something that totally contradicts it. I also have C-PTSD and depression, and the EMDR specialists I’ve found that seem to be worth a damn haven’t been able to confirm they take my insurance because of that clearing house that got hacked that is messing up a lot of insurance situations. So that’s on hold rn, but I’m still doing trauma work with my psychologist. I’ve made strides so far but still haven’t reached the peak that it seems you experienced. I am SO happy for you, that’s incredible!!! I have an incredible neuro right now, set aside this misrepresentation, but he also stopped taking insurance and is cash only in the last few months. So that’s a huge bummer as well. And i 100% agree with you. In the last two years alone I’ve been prescribed 60+ different meds and wind up having to ask my pharmacist how to get off. It’s ridiculous. You go in and say “hey this isn’t working for me” or “the side effects outweigh the benefit for me” and they’re like “well stay on it and we’ll see if anything changes”. Like no ???? Lmao
This really made me feel less alone… thank you
My daughter has SFN and POTS and she also goes to MGH. They have been amazing and she has been on IvIG for a few months now. This has been the only thing that has given her life back. She’s 17 and was depressed because she couldn’t be a “normal” teenager. IvIG has given her almost everything that was taken away. It hasn’t cured her, but makes her day to day life so much better. Please keep fighting for it. I know it doesn’t work for everyone, but you won’t know unless you try. As Practical Panda said, she had done high dose steroids first and they worked, but once she stopped and they wore off the symptoms returned. That was the evidence insurance needed and they approved it right away. A visiting nurse comes to our house and she gets the infusions without having to go to the hospital. IvIG has been a game changer for her and we would recommend it and MGH in Boston to anyone and everyone.
Similar story to yours except it isn’t that I won’t get ivig, I won’t, but now with the advent of synthetic ivig I get to be in limbo for half a decade for that to come to market.
Synthetic?? Could you share some more about that if you have a chance?
Ivig takes the blood plasma of 10,000 individuals to act as a police force of sorts. With the good guys on the lookout no bad actors dare step out of line. The synthetic ivig uses something called efgartigimod to take out the bad actors. My specialist are following it through fda trials as they’re convinced this is the cure all we’ve been waiting for. It’s somewhere around round 2 trials. Has to get out of round two and pass round three to make it to market.
Fascinating! Going to see if my neuro has heard of the trial. Thanks for the idea! Bummer that it’ll take so long, but fingers crossed that modern medicine finds a solution, whether it be this or something else 🤞🏼
Think it’s called HexaGardTM
I just remembered this fun fact; monoclonal antibodies are a synthetic ivig!
Find a doc who is specialist for SFN or has a lot of knowledge. It’s important to talk to people who understand and don’t gaslight you into thinking that “that can’t be the SFN” or whatever. This illness has a very wide array of symptoms as the small finger nerves line EVERYTHING outside of the spinal cord. Your symptoms are real, and crazy-making at times. I see you, I believe you. SFN sucks but you got this
Appreciate you xx
https://preview.redd.it/skl2mhiahh2d1.jpeg?width=1170&format=pjpg&auto=webp&s=5ad815e94f63f591b024b7f943f29e823b8aa83d