Badges (2)


Member has chosen to not make this information public.


Member not yet following any Groups.


Member not yet following any Pages.

Posts (25)

2 days ago · Small Fiber Neuropathy in Neuropathy

The cost of IVIG is $15,000 per month if with a pharmacy or $45,000 a month if through a hospital so not a cheap remedy, but if it makes you better well worth the cost. Depending on the contract your doctor's doctors group has with your insurer and his hospital, getting you IVIG coverage can impact his salary, bonus or extra money for new equipment. So don't assume that your doctor is trying as hard as is necessary to get you coverage. Ask to see any letters/appeals the are going to the insurer. Whether because they are not trained in advocacy or because they don't really want you to get coverage letters and appeals to insurers can be terrible.

Urge them to push for a 3 month trial to demonstrate that it works. Make sure that your doctor isn't putting things in his opinion that give your an insurer a good reason for denial. I could walk on snow since I was 10 with no other major effects; then about 18 months ago I got a rapidly progressive PN that impacts every aspect of my life. The opinions of my doctor to me as well as doctors from the Mayo and Tufts is that I have a new separate autoimmune mediated PN. However, my doctor started his letters "Mark has a long history of hereditary neuropathy." Either he doesn't know how to make an arguement or wanted BCBS to have a good reason to deny my application.

3 days ago · Small Fiber Neuropathy in Neuropathy

Hi Cwallen9,

Sorry that you have small fiber neuropathy which is causing you so much pain. Your list of medications is very familiar. Really hope that your implant continues to provide increasing relief.

Just curious, did any of your doctors suggest IVIG the antibody therapy? IVIG using antibodies from around 1000 transfusions to bolster your immune system, provide symptom relief and provide energy to do the things you want to do at least part of the month.

They did a study at Mass General Hospital in Boston of IVIG with 55 patients that had small fiber neuropathy did not have the traditional marker for autoimmune or inflammatory processes and 70+% had positive responses to the treatment. They are now recruiting for a double blind study on the results of IVIG on SFN patients.

My doctors have diagnoses me with rapid onset peripheral neuropathy that is autoimmune induced. I have small, large, motor and autonomic neuropathy. Last July I was close to having to be in a wheelchair to get around, I actually needed one to make an airplane connection.

My IVIG in August was amazing and completely got rid of some terrible symptoms like intense burning in my hands and feet. Many have never come back. Other symptoms get better with the treatment, but as my liver processes the antibodies out of my system (21 day half life), some other systems slowly come back. But most exciting was that by day 2 my walking was improving dramatically. Walk with a bit of a shuffle, but I can slowly walk my dog and get around the grocery store with no problem (shopping cart walker helps!).

My experience is that doctors don't want to prescribe this as it adversely impacts their own finances and the amount of bonuses and raises. Additionally, insurers put pressure on doctors and doctors groups not to prescribe such expensive remedies ($15,000 per months for the rest of your life in many cases). It is my understanding that the insurers are reducing the number of diseases (BCBS has 15) the are at least covered for a 3 month trial of IVIG. This is the reason for the double blind study to force insurers to at least patients with SFN try IVIG.

A friend I know was able to go back to work full time after her first infusion. She has SFN and no autoimmune or inflammatory markers.

IVIG is expensive but how much is a life worth? Shouldn't people who have symptoms that are destroying their traditional life get a chance to see if IVIG works? Insurers have to allow IVIG if it is medically necessary. This means in my case I used my retirement funds to pay for a 3 month trial and proved it works. Now BCBS is paying for my IVIG treatment and is going to reimburse the money I spent on the trial so I will get my retirement funds back.

I monitor this site and there is very little discussion about the effectiveness and side effects of IVIG. If it works its a miracle, it also can be an expensive disappointment if it doesn't work. All I know is that 4 people I know including me have benefited greatly and 2 people I know had no effect from the injections. Hope there will be an active discussion here about the use of IVIG, despite doctors and insurers cooperating to limit the use of this drug.

One more thought is that if more people use this, scientists will develop bacteria (or pigs?) to produce the antibodies like they do with insulin and other natural components. For now, patients with debilitating symptoms need to demand a 3 month IVIG trial, and get a second opinion if there first doctor is resisting to prescribing IVIG.

Good luck!

Nov 5, 2018 · Small Fiber Neuropathy in Neuropathy

Ask you new doctor about IVIG! It is the only thing that will reverse your symptoms if it works for you. Recent study of small fiber neuropathy with no autoimmune or inflammatory markers showed 74% improved with IVIG. That study had 55 hand picked patients. MGH now doing a double blind study to prove IVIG works for small fiber. I was almost in a wheelchair and after IVIG I am walking my dog (slowly) through the woods. A world of difference!

Oct 11, 2018 · IVIG Infusions in Neuropathy

I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no abnormal autoimmune or inflammatory tests. Went from working around the world to being disabled in less than a year. Had to push my neurologist to prescribe it and then push him to help me appeal my insurance coverage, which he did reluctantly. When I exhausted the appeals I was taking wheelchairs through airports and it was looking like I would be using it much more frequently. I have had to self-fund and OMG what a difference. 40% of my symptoms (feet, legs, hands, face…) were gone in a week and it continues to get better. A friend with idiopathic short fiber neuropathy has gone on IVIG and eliminated 100% of her symptoms. There is a double blind trial out of MGH testing IVIG on idiopathic short fiber neuropathy. You can contact Dr. Oaklander at MGH for information, not sure when they will be recruiting.

IVIG is really restricted by all insurance companies and is being more restricted by the year. There are economic incentives for some doctors not to recommend it. I have been surprised how little there has been on this site about IVIG as it is the only thing I have seen in my research that can reverse many neuropathic symptoms.

Sep 20, 2018 · Small Fiber Neuropathy in Neuropathy

Have your doctors talked about IVIG? I have widespread neuropathy symptoms, no sweating well below my waist, positive for short fiber, long fiber, motor and autonomic nerves but negative for lip biopsy and other common inflammatory and autoimmune tests. Started IVIG last month and it resolved about 40% of my symptoms with one infusion. IVIG doesn't work for everyone, but there are studies to see who additionally can benefit from IVIG treatments.

Aug 16, 2018 · Living with Neuropathy - Welcome to the group in Neuropathy

Yes. Need support of neurologist, internist and for me a psychologist.

Aug 14, 2018 · Anyone have Pain in hip flexors, thighs, knees? in Neuropathy

You might want to try seraquil at 50 or 100 mg just at bed time. It is an anti-psychotic which at low doses causes you to sleep. I'm not a doctor but as I understand it, it is not a sleeping pill and is not addictive. It works kind of like the medicine in Nyquil. I wasn't sleeping due to pain all over and "zappers" that I'd get at night, but this knocked me out, but I can wake up if need be, have no morning fog. One more off-market drug!

Aug 13, 2018 · Tingling in arms and legs - will this get worse? Can I still function? in Neuropathy

Hello Mary,

Certainly agree that you should get a second opinion on surgery. However, stenosis surgery has improved dramatically so it is common not to have a fusion with it. I had a 5 hour stenosis surgery on my lower back fixing stenosis in both the facet joints and my central spine and the recovery was really easy and it made it so I could walk again. Additionally, 4 fiends have had both cervical and lower back stenosis surgeries which worked great, removed the pain and all four were back to work in two weeks. I put off back surgery for decades, but no longer fear some back surgeries. Be sure that your surgeon only does back surgeries and is up on the latest techniques.

That being said, as far as your concern about where your neuropathy is going to go and how it will affect you, I have a couple comments. First, keep working on finding a cause because if you get a diagnosis you will know the likely course. However, if you are like me and have idiopathic neuropathy so the cause is currently unknown, then you need to pursue symptom relief. This can be a range of medications, IVIG is the only one that can actually reverse symptoms. Nerve stimulators and pain med pumps can come in if it is really bad. Second, the time you are worrying is kind of wasted worry. The neuropathy will progress as it will and you have a lot of adaptation and coping mechanisms. When the neuropathic pain first move to my hands, face and head (It had slowly progressed in my feet and legs for years before this happened) I said that I would kill myself if this is permanent. The fact is they are both much worse but through meditation and mindfulness, I have come to peace with it which I find to be a much more productive way to deal with the unknown progression. There are many apps out there (Headspace and calm) and CDs (Full Catastrophe Living, John Kabat-Zinn, Tich Nat Hahn, Pema Chodren and many others). Meditation really helps more than most medications.