Hi @jfn, yes. I’m really asking if/how people may have had success getting IVIg treatment when their doctors or insurance companies are resistant. It has been shown to be effective in many cases of SFN.
I do exercise daily and eat right, aside from sugar. My symptoms, unfortunately, have become significantly worse in the past six months. IVIg feels like the last hope for anything other than pain meds, but the MDs want a definitive antibody test result before they will prescribe. Which would be fine if they could test for every autoimmune disease. But they can’t.
Hi @larry4343, I'm hoping other members that experienced the same struggle getting the IVIG treatment can share with you. I did find this 2018 article that discusses the problem and might give you some ideas.
Hi. I’m so sorry.
I have ( more than likely) post surgical neuropathy but NO Dr will even discuss it. All claim they’ve never heard of it ( studies go back past 2002).
I feel your pain fr sure.
I’ve been sick since Mar 2000 diagnosed with multiple spine diseases at almost every level.
When my L leg stated to drag, my military medical team did lumbar surgery. I only had mild, localized spine pain att.
I woke up on fire waist down.
Couldn’t even sit on my bedside.
It took a year of me researching online n asking about th pins/ needles n hot shards of glass feeling on my feet.
Two weeks into my convalescence at home, my 8 month old cervical fusion broke. Att I then had the exact same symptoms in my arms, face/head. Severe neck pain accompanied my new sensations.
In 2010 I found th post surgical neuropathy info. I was shocked. Because I’m not diabetic I didn’t realize th neuropathy is progressing th entire time and ruining my nerve endings 🥵
I’ve tried every medication out there-only a couple really help until last yr. Unfortunately th severe cognitive impairment is making life very difficult day to day.
I can’t even find a civilized neurologist to discuss my thoughts with here locally. They either ignore me, insult me n infer im neurotic n disease hunting online.
Horizant
Savella
Nucynta
Help my pins needle n muscle pain the most.
ALL inhibit or seem to flush vital vitamins from th body.
Diclofenac pills messed up my gut so bad I got staph in my skin n can’t shake it. Th lesions come out less but any cuts get infected and don’t want to heal.
Turn to homeopathic and natural medicine. Some Ayurvedic herbals too.
Probiotics help normalize digestion and vitamin absorption.
Organic food / drink is our new staples.
Reserve osmosis water filters to decrease my toxic load overall because of course th thyroid takes a huge hit.
I now understand through various sources, IVIG is like gold n almost no one gets it.
I can’t even get an EMG without sacrificing a body it seems let alone a spinal tap🙁.
Th best I can say is: I looked up a holistic provider fr neuropathy.
200$ fr a 30 min zoom meeting.
Best money I ever spent.
He verified my switch to organic, start red Light Therapy, get thyroid testing because most of us have no thyroid activity anymore. All 6 test not TSH. Start vitamin C n L-Glutamine to raise glutathione levels. I also need;
Potassium
Calcium
Zinc
Thyroid supportive liquid B ( helps pain overall)
Thyroid supportive ADK vitamins ( helps toxicity n levels)
Liquid high gamma E
Nascent iodine
Hydrogen inhalation ( nebulizer)
Alkaline ph water every day before any food.
Collagen gut healing ( leaky gut)
Primrose Oil ( pins/ needles) anti inflammatory. 1300mg 4x /day
Homeopathic fibromyalgia relief
( can b found on Amazon red/white label)
Homeopathic arnica and muscle / joint blend fr pain.
Arnica topical gel and oil based
Magnesium oil topical every day sometimes 2x / day.
Soak w/ 2C Epsom salts / 1C baking soda. Helps body alkalinity n reg muscles pain.
Stay away from vegetable oil of any kind.
Coconut oil, organic butter, ghee. Fr cooking. Eating/frying.
Look up:
Thyroid holistic remedies
Holistic practioner for th neuropathy in general.
If you can afford infusion services, vit c n glutathione directly is most help. Won’t repair damage already done. Just helps slow neuropathy.
Check out Ayurvedic supplements.
I hope this helps. I know my pain is crazy and I’ve been force tapered ( or no tapered) 3 times in 20 yrs. It’s a constant stressor. I’ve got a blemish free record but no one cares about that just their own agendas n mainstream bs.
I’ve lost my pain Dr more than once too.
Hi @amandajro, thank you for the reply. And the link.
I’m switching hospitals in April (first available) to Mass General. My current neurologist (a stroke specialist) haas been trying to transfer me to one of their own neuromuscular specialists, but they are convinced from an EMG that I have a lumbar radiculopathy with an early case of idiopathic peripheral neuropathy. It’s that team that blocked the IVIg.
FWIW, I’d be happy with a radiculopathy, but two radiologists and a spine surgeon say my MRI is clean. So I’m stuck with one side saying it’s X, and one side saying it’s not. Neither is willing or able to treat, and my neurologist just shrugs.
Hi Larry. I’ve been looking at th discussion.
“ no sense in treating neuropathy “ a lazy cop out because th nerve damage PROGRESSES.
I’m having same problem your having.
A skin biopsy is one sure fire way th other is an MRI of Sciatic nerve itself.
These r 2 fool proof tests.
EMG isn’t sensitive enough fr SFN.
My tremors r awful now n my muscle pain is at least a 15 on a 1-10 scale.
I replied to another post u had I think.
Food n plant supplements are medicine.
I’ll b praying fr you too✝️🇺🇸
Hi @jfn, yes. I’m really asking if/how people may have had success getting IVIg treatment when their doctors or insurance companies are resistant. It has been shown to be effective in many cases of SFN.
I do exercise daily and eat right, aside from sugar. My symptoms, unfortunately, have become significantly worse in the past six months. IVIg feels like the last hope for anything other than pain meds, but the MDs want a definitive antibody test result before they will prescribe. Which would be fine if they could test for every autoimmune disease. But they can’t.
I feel your frustration. Six years ago my doctors then wanted to do an MRI as part of their diagnostic approach to understanding my idiopathic PN but couldn’t because of the metal in my ICD. My local Neurologist and 2 Neurologists from different medical university hospitals hours away from where I lived that I was referred to for consultations all documented it in their records. I had to move to another state, and 2 years ago, my ICD came due for replacement after a long life, so my cardiology team replaced the device and wires with newer parts that make my ICD compatible now to easily get an MRI when needed. I was excited, but my Neurologist in that state I’d moved to was not; his opinion was I didn’t need it! I practically begged… I wanted a little more closure to know that no stone has been left unturned in my idiopathic diagnostic journey. I haven’t been able to completely let go of the thought we could possibly learn something from it, especially since 3 neurologists in 2016/2017 said they’d wanted one. My PCP, a great doctor but in the same medical system as that Neurologist, couldn’t/wouldn’t overturn him since he was the specialist in Neuropathy, who honestly did nothing at all for my neurological “care” the 2 years I was with him.
Fast forward to now - this week I moved back to the state I lived in 6 years ago, but this time the city is in the same area as the medical university hospital I had a consultation with. I’m not keen on using that system for everything, but I have opted to schedule with the Neurologist I saw in 2016. I wonder if she’ll stick by her original documented note about the desire for an MRI for my case, or if she now changes to my last doctor’s belief there’s no chance of finding anything from it now. If she has changed her mind about the benefit of an MRI to put closure on doing everything we could do to try to diagnose and manage my care, then I think I can come to terms with it, and I imagine I’ll get a good reasoning for her change in decision. It won’t be from insurance though, most of what I’ve read from this group is that MRI’s are pretty commonplace for Neuropathy patients.
So I sympathize for wanting a treatment if there’s a chance it will help you improve, and you have had previous good results from it. I’m only asking for a test. It’s by far the reason we have moved close to this university hospital; in fact, it was far from my destination of choice. But 2nd opinions from different medical systems are your best shot at getting an individual/unbiased new decision. Sure, previous medical records follow you, and in many cases are read, so all bias won’t be removed, and there may be a lot of professional courtesy to not override previous doctors or do the work required for a new personal assessment, but I’ll be hoping you get a fair review!
Hi @jfn, yes. I’m really asking if/how people may have had success getting IVIg treatment when their doctors or insurance companies are resistant. It has been shown to be effective in many cases of SFN.
I do exercise daily and eat right, aside from sugar. My symptoms, unfortunately, have become significantly worse in the past six months. IVIg feels like the last hope for anything other than pain meds, but the MDs want a definitive antibody test result before they will prescribe. Which would be fine if they could test for every autoimmune disease. But they can’t.
Good morning,
In response to your post, I have been receiving IgG infusions for over a year now and it has been with great success. I was diagnosed with CIDP and I had severe leg weakness, fatigue, paresthesia and pain. The IGG infusions have helped with weakness, paresthesia, and fatigue. I am on Medicare and we had to jump through hoops for approval of IgG. One big issue was that I had to have tried other treatments first, meaning steroids. Once I tried steroids without success they approved IgG.
Also you mentioned you were on a good diet aside from sugar. I have found that when I eat sugar my symptoms are severe. Exercise, good diet, and decreases stressors always make my life better.
One last thing in todays medical world, I can’t express enough YOU HAVE TO BE your own ADVOCATE. Sometimes a second opinion can help!
Please keep us informed about how things are going.
I did this so you can more easily connect with members such as @kimegraves@dbeshears1@lmill7 and @aaroncush (who responded to you with an article). They can share their experience and/or what they've learned with you regarding IvIg and neuropathy.
Is this a treatment that has been offered to you or one you are curious to learn more about as a potential option?
I did this so you can more easily connect with members such as @kimegraves@dbeshears1@lmill7 and @aaroncush (who responded to you with an article). They can share their experience and/or what they've learned with you regarding IvIg and neuropathy.
Is this a treatment that has been offered to you or one you are curious to learn more about as a potential option?
Hi Amanda
Thank you.
Im getting checked for auto antibodies and reviewing latest research using ivig. If I test positive may be trying it so long as no allergic rxn or severe side effects.
EAH2
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Hi @larry4343, I'm hoping other members that experienced the same struggle getting the IVIG treatment can share with you. I did find this 2018 article that discusses the problem and might give you some ideas.
-- Review process for IVIg treatment - Lessons learned from INSIGHTS neuropathy study:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6276327/
-
Like -
Helpful -
Hug
2 ReactionsHi. I’m so sorry.
I have ( more than likely) post surgical neuropathy but NO Dr will even discuss it. All claim they’ve never heard of it ( studies go back past 2002).
I feel your pain fr sure.
I’ve been sick since Mar 2000 diagnosed with multiple spine diseases at almost every level.
When my L leg stated to drag, my military medical team did lumbar surgery. I only had mild, localized spine pain att.
I woke up on fire waist down.
Couldn’t even sit on my bedside.
It took a year of me researching online n asking about th pins/ needles n hot shards of glass feeling on my feet.
Two weeks into my convalescence at home, my 8 month old cervical fusion broke. Att I then had the exact same symptoms in my arms, face/head. Severe neck pain accompanied my new sensations.
In 2010 I found th post surgical neuropathy info. I was shocked. Because I’m not diabetic I didn’t realize th neuropathy is progressing th entire time and ruining my nerve endings 🥵
I’ve tried every medication out there-only a couple really help until last yr. Unfortunately th severe cognitive impairment is making life very difficult day to day.
I can’t even find a civilized neurologist to discuss my thoughts with here locally. They either ignore me, insult me n infer im neurotic n disease hunting online.
Horizant
Savella
Nucynta
Help my pins needle n muscle pain the most.
ALL inhibit or seem to flush vital vitamins from th body.
Diclofenac pills messed up my gut so bad I got staph in my skin n can’t shake it. Th lesions come out less but any cuts get infected and don’t want to heal.
Turn to homeopathic and natural medicine. Some Ayurvedic herbals too.
Probiotics help normalize digestion and vitamin absorption.
Organic food / drink is our new staples.
Reserve osmosis water filters to decrease my toxic load overall because of course th thyroid takes a huge hit.
I now understand through various sources, IVIG is like gold n almost no one gets it.
I can’t even get an EMG without sacrificing a body it seems let alone a spinal tap🙁.
Th best I can say is: I looked up a holistic provider fr neuropathy.
200$ fr a 30 min zoom meeting.
Best money I ever spent.
He verified my switch to organic, start red Light Therapy, get thyroid testing because most of us have no thyroid activity anymore. All 6 test not TSH. Start vitamin C n L-Glutamine to raise glutathione levels. I also need;
Potassium
Calcium
Zinc
Thyroid supportive liquid B ( helps pain overall)
Thyroid supportive ADK vitamins ( helps toxicity n levels)
Liquid high gamma E
Nascent iodine
Hydrogen inhalation ( nebulizer)
Alkaline ph water every day before any food.
Collagen gut healing ( leaky gut)
Primrose Oil ( pins/ needles) anti inflammatory. 1300mg 4x /day
Homeopathic fibromyalgia relief
( can b found on Amazon red/white label)
Homeopathic arnica and muscle / joint blend fr pain.
Arnica topical gel and oil based
Magnesium oil topical every day sometimes 2x / day.
Soak w/ 2C Epsom salts / 1C baking soda. Helps body alkalinity n reg muscles pain.
Stay away from vegetable oil of any kind.
Coconut oil, organic butter, ghee. Fr cooking. Eating/frying.
Look up:
Thyroid holistic remedies
Holistic practioner for th neuropathy in general.
If you can afford infusion services, vit c n glutathione directly is most help. Won’t repair damage already done. Just helps slow neuropathy.
Check out Ayurvedic supplements.
I hope this helps. I know my pain is crazy and I’ve been force tapered ( or no tapered) 3 times in 20 yrs. It’s a constant stressor. I’ve got a blemish free record but no one cares about that just their own agendas n mainstream bs.
I’ve lost my pain Dr more than once too.
Prayers n Blessings
💕✝️🇺🇸
-
Like -
Helpful -
Hug
4 ReactionsHi Larry. I’ve been looking at th discussion.
“ no sense in treating neuropathy “ a lazy cop out because th nerve damage PROGRESSES.
I’m having same problem your having.
A skin biopsy is one sure fire way th other is an MRI of Sciatic nerve itself.
These r 2 fool proof tests.
EMG isn’t sensitive enough fr SFN.
My tremors r awful now n my muscle pain is at least a 15 on a 1-10 scale.
I replied to another post u had I think.
Food n plant supplements are medicine.
I’ll b praying fr you too✝️🇺🇸
-
Like -
Helpful -
Hug
3 ReactionsI feel your frustration. Six years ago my doctors then wanted to do an MRI as part of their diagnostic approach to understanding my idiopathic PN but couldn’t because of the metal in my ICD. My local Neurologist and 2 Neurologists from different medical university hospitals hours away from where I lived that I was referred to for consultations all documented it in their records. I had to move to another state, and 2 years ago, my ICD came due for replacement after a long life, so my cardiology team replaced the device and wires with newer parts that make my ICD compatible now to easily get an MRI when needed. I was excited, but my Neurologist in that state I’d moved to was not; his opinion was I didn’t need it! I practically begged… I wanted a little more closure to know that no stone has been left unturned in my idiopathic diagnostic journey. I haven’t been able to completely let go of the thought we could possibly learn something from it, especially since 3 neurologists in 2016/2017 said they’d wanted one. My PCP, a great doctor but in the same medical system as that Neurologist, couldn’t/wouldn’t overturn him since he was the specialist in Neuropathy, who honestly did nothing at all for my neurological “care” the 2 years I was with him.
Fast forward to now - this week I moved back to the state I lived in 6 years ago, but this time the city is in the same area as the medical university hospital I had a consultation with. I’m not keen on using that system for everything, but I have opted to schedule with the Neurologist I saw in 2016. I wonder if she’ll stick by her original documented note about the desire for an MRI for my case, or if she now changes to my last doctor’s belief there’s no chance of finding anything from it now. If she has changed her mind about the benefit of an MRI to put closure on doing everything we could do to try to diagnose and manage my care, then I think I can come to terms with it, and I imagine I’ll get a good reasoning for her change in decision. It won’t be from insurance though, most of what I’ve read from this group is that MRI’s are pretty commonplace for Neuropathy patients.
So I sympathize for wanting a treatment if there’s a chance it will help you improve, and you have had previous good results from it. I’m only asking for a test. It’s by far the reason we have moved close to this university hospital; in fact, it was far from my destination of choice. But 2nd opinions from different medical systems are your best shot at getting an individual/unbiased new decision. Sure, previous medical records follow you, and in many cases are read, so all bias won’t be removed, and there may be a lot of professional courtesy to not override previous doctors or do the work required for a new personal assessment, but I’ll be hoping you get a fair review!
-
Like -
Helpful -
Hug
3 ReactionsGood morning,
In response to your post, I have been receiving IgG infusions for over a year now and it has been with great success. I was diagnosed with CIDP and I had severe leg weakness, fatigue, paresthesia and pain. The IGG infusions have helped with weakness, paresthesia, and fatigue. I am on Medicare and we had to jump through hoops for approval of IgG. One big issue was that I had to have tried other treatments first, meaning steroids. Once I tried steroids without success they approved IgG.
Also you mentioned you were on a good diet aside from sugar. I have found that when I eat sugar my symptoms are severe. Exercise, good diet, and decreases stressors always make my life better.
One last thing in todays medical world, I can’t express enough YOU HAVE TO BE your own ADVOCATE. Sometimes a second opinion can help!
Please keep us informed about how things are going.
-
Like -
Helpful -
Hug
8 ReactionsAnyone with idiopathic non-length dependent peripheral neuropathy (NLDPN) and on IvIg treatment? If yes how is it going?
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1 ReactionThis article suggests not a good fit: https://n.neurology.org/content/96/20/e2534. They excluded anyone with autoimmune.
Hello @eah2 and welcome to Mayo Clinic Connect. I was able to find a discussion on IvIg for neuropathy so you will notice I have moved your post here:
- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/
I did this so you can more easily connect with members such as @kimegraves @dbeshears1 @lmill7 and @aaroncush (who responded to you with an article). They can share their experience and/or what they've learned with you regarding IvIg and neuropathy.
Is this a treatment that has been offered to you or one you are curious to learn more about as a potential option?
-
Like -
Helpful -
Hug
1 ReactionHi Amanda
Thank you.
Im getting checked for auto antibodies and reviewing latest research using ivig. If I test positive may be trying it so long as no allergic rxn or severe side effects.
EAH2
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Helpful -
Hug
1 ReactionAaron,
This study excluded non length dep pn. A more recent clinical trial is in phase 2 .