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.
Hi @johnbishop , thank you for both the welcome and information. The answer to your question is I don't know I would like to explain my answer and in doing so give a little history and maybe look for some insight or advice or just talk so I don't feel alone or stupidity like a couple so called a Top MS doctor . I didn't realize neurologist treat many conditions but specialize in particular one. In 2015 I was experiencing very unusual changes to my thought process to my muscle control to the way I had to think before my words could come out I had to connect the thought to the words. My speech was slurred my balance was off. My primary care physician suggested I call the hospital my doctors were with for appointment with neurologist. October 2015 I met with neurologist who had a great reputation. I had so much other medical problems osteoarthritis throughout my body from feet , knees, spine and neck, thyroid disease fibromyalgia you get it I underwent months of test she diagnosed me with MS. Still continued to run more tests one being a spinal tap. Because of 3 oncological bands found in my serum along with other medical terms it was Ms and Gillian barre syndrome at that point she told me I need it IVIG infusion treatments okay 6 months twice a week for 5 hours a day. In 3 months she never wants talk to me about my multiple sclerosis. A nurse ran the infusion treatment center. After a couple months I finally connected with the doctor her response was continue taking the injections for Ms unless something happens we will meet when infusion treatment is completed in October 2016
Times nurse couldn't find a vein my blood pressure was low the nurse suggested to Dr. To pause IVIG for a few weeks Dr insisted I was fine . One day after treatment I was extremely tired not like the Norm
Almost 7 days I stayed in bed .time for hospital chest is hurting now . 7/2016 in hospital for 6 days pneumonia, internal bleeding, ulcer I became anemic. I'm sorry this became a book . I finished treatments my PCP called her from my bedside letting her know my situation and take a pause. She ordered a MRI of brain and said I must finish
I did she said I needed more however when she was told insurance company only paid 6 mos. She didn't order another test to see if IVIG worked toe to schedule appointment with assistant. The next neurologist did great exam mental and physical sent me for more MRI
And said he doesn't know about Gillian barre but Ms yes but he specialized in strokes so he sent me to The MS doctor the best . More mri's of brain and cervical spine. No exam. No asking symptoms nothing test came back he responded by telling me I need to see neurosurgeon. My neck has changed since last MRI
What the one 4 months prior he brushed me off as yes you have an abnormal brain scan and lesions etc and one at base of skull oh and by the way you have arterial sclerosis and I asked him what's that and what does he do for treatment he said he does nothing my primary doctor should have seen that okay.
I spent 4 years on a treadmill one doctor to another . My back became cripplingly I did have 2 spinal operation. I just stopped unless your brain lighting up like a Christmas tree Ms is still I think not understood. Not one doctor looked or brought up my spinal tap. Report that said Ms etc but other test to make sure it's not lupus or other disease.
This is a whole nother area lol but a was a teen mom and married and beat from 16 to 19
I said it aloud
so where or who do I go to who will treat me and my health with some real involvement, I dont know the words im looking
I'm sure you understand. Thanks for allowing me to the opportunity to put this down
What 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.
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.
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,
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,
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,
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
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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.
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2 ReactionsWhat 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