Has anyone had IVIG Infusions for Neuropathy?
Anyone had success with IVIG infusions for idiopathic neuropathy ?
Interested in more discussions like this? Go to the Neuropathy Support Group.
Anyone had success with IVIG infusions for idiopathic neuropathy ?
Interested in more discussions like this? Go to the Neuropathy Support Group.
Can you elaborate as to what it is?
IVIG therapy intravenous immunoglobulin. It helps build up your immune system. It has been known to slow down the progression of neuropathy. IVIG therapy can also help with nerve regeneration. It takes approximately six months before you see the difference. If stopped the neuropathy will progress really fast. Once you are on it you are supposed to be on it for life. It is expensive but you can get the medication discounted through the manufacturers patient assistance program.
-
Like -
Helpful -
Hug
1 ReactionWhat were your symptoms with the abnormality at the base of your skull. I found that I had one too about 20 years ago and scheduled to have an MRI in a few weeks.
Were you pleased with your visit (s) with Dr. Oaklander? I have peripheral SFN and read her articles and listen to her on YouTube.
Dr Oaklander is really nice. I needed some answers about my neuropathy. I flew from Texas to Boston to see her. Before, I got there I had a ton of labs drawn that she requested. First, time anyone had ran that many labs on me.
Yes, I was happy with Dr Oaklander. I was diagnosed with motor neuropathy awhile back. Everyone telling me I had essential tremors when the tremors in my legs and arms are from the motor neuropathy. The neurologist in Dallas Texas missed diagnosed the tremors,
May I ask you what she suggested you try?
What did she suggest you try to help dealing with it?
I have severe axonal sensorimotor polyneuropathy
SFN
Can - cardiac autonomic neuropathy- they can’t do anything my blood pressure and heart rate are either high or low. I was told I only had eight years left. Medications don’t stop the bradycardia/ tachycardia
Neuromuscular neurologist
Neuromuscular physical therapist
Immunologist
Rheumatologist (since mine is autoimmune.
I was on gamma goblin as a child from age 10-18. Taken off when I fell off my parents insurance.
My symptoms are on the severe side. Dr Oaklander wrote my doctors and told them they had been negligent in my care that I should not be in the shape I am in. They decided to start doing something. Dr Oaklander wants me back on IVIG therapy. She told me it takes at least six months to start working. I have a weak immune system and get sick really easy. They have finally treating me for my RA and they believe I have CIDP which is a form of neuropathy that affects the immune system. I am supposed to follow up with her in a year. Since, I don’t live in a state she practices in she cannot treat me. She practices in Boston , Florida and another state I would have to look it up.
I live in Texas which is not a medical marijuana state. If you listen to her lectures on YouTube she has done a study on marijuana and neuropathy. Marijuana has shown benefits in nerve regeneration. Israel and a couple of other countries have a ton of studies. I have read articles in the medical journal of neurology. My neurologist signed me up for them since I went through RN school. If I lived in a medical marijuana state I would make my own edibles because of all the chemicals they add plus I am asthmatic. I am allergic to over 50 different medications including Lycia and neurotin.
The only other thing is I take OxyContin and OxyContin for pain muscle spasms Soma. I am allergic to baclofen which is what most people recommend.
There is a prescription pain cream compounded especially for me my the neurologist.
Here are the ingredients ( just an fyi if you try it wear a really big pair of socks to bed it’s sticky) One of the ingredients is a long lasting lidocaine
Prescription
Pain cream
2% Bacflofen
6% gabapentin
10% ketamine HCL
2% cyclobenzaprine
10% Diclofenac Sodium
2.5% tetracaine HCL
25% propylene
10% lipoderm