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Posts (29)

Sat, Feb 9 7:38pm · People with non diabetic neuropathy in Neuropathy

Hi,

Have you tried lyrica? I have painful short fiber, long fiber, motor and autonomic PN and took up to 3600 mg of gabapentin and then switch to lyrica and it worked tremendously better. Many people in my neuropathy group tried lyrica and hated it so I think it is an individual thing. It works great (relatively speaking – not getting rid of all pain) for my foot pain but does nothing for my hand pain.

Keep looking! There are lots of good suggestions here.

Sat, Feb 9 3:11pm · People with non diabetic neuropathy in Neuropathy

Both the doctor and nurse practitioner are both fabulous. It is a small department so if you go in you will get the right people.

Sat, Feb 9 3:08pm · People with non diabetic neuropathy in Neuropathy

I think that my doctor told me that there are drugs but so far I have just changed my shirts frequently. You should ask your doc.

Thu, Jan 31 1:53pm · Small Fiber Neuropathy in Neuropathy

IVIG is a monthly infusion of antibodies from hundreds of transfusions. If you have certain inflammatory or autoimmune conditions it will make a huge difference in your symptoms. I was almost in a wheelchair and now am walking with only a slight limp. There is evidence that it helps a majority off people with SFN. There is a double blind study going on right now to show how IVIG works on SFN. I have PN in short fiber, long fiber, motor and autonomic nerves. IVIG helps a lot with sensory PN. Even if you don't have the classic symptoms of inflammatory or autoimmune PN IVIG can often help. It is expensive so most insurance limit IVIG to about 15 discrete diseases and where "medically necessary." You need a creative doctor to help prove that IVIG is medically necessary for you.

Mon, Jan 14 9:18am · 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.

Sun, Jan 13 9:35am · 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.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

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.