I was on IVIG therapy from age 10-18. I went off of it when I went off my parts insurance. It worked wonders. I will tell you something else that is working. The United States isn’t there yet. I am using alpha lipoic acid. In Germany where my husband is stationed they use IV alpha lipoid acid. I have a lot of drug allergies so they started me off slow. I ordered the pills through Krogers Pharmacy I could not find it on the shelf. https://www.webmd.com/vitamins/ai/ingredientmono-767/alpha-lipoic-acid
I take a small pill once a day of that, what is your dosage. I have some severe nerve damage in my ankles, possibly a blood disorder or maybe nerve deterioration. Do you think this might help and how much do you take or do you recommend? Thank you for your response.
I take a small pill once a day of that, what is your dosage. I have some severe nerve damage in my ankles, possibly a blood disorder or maybe nerve deterioration. Do you think this might help and how much do you take or do you recommend? Thank you for your response.
Due to all my drug allergies we started off at 200 mgs. The neurologist wants me on 600 am and 600 pm. So currently I am at 400 mgs what ever time of day I take it. The Germans have been using it since 1966.
I am too scared to complain. Let me explain what I mean. In 2002 I got bacterial spinal mengitis. I lost my short term memory and did not remember my coworkers. I had to relearn how to write, read and drive. In 2010 I had three left hip replacements and an actebulum fracture. It took me a year and a half to be able to walk again. I can't walk as fast as others or my hip will give out with extreme pain. I lost a lot of friends. Now I have this that no one can figure out. All my inflammatory markers are high but I test negative for everything. Current diagnosis small fiber neuropathy, cardiac autonomic neuropathy and severe axonal senorimotor polyneuropathy. Here is my question after all this two doctors brought up CIDP. All my autoimmune markers are high but test negative for everything.
If I have CIDP do I have everything else or just CIDP?
I had IVIG infusion treatments for 6 months twice a week neurologist diagnosed me with MS I had a spinal tap done as part of the testing for MS
She said it showed I had Guillian barre syndrome which is an autoimmune disease as well but affects peripheral nerves
I know what the testing involves. I am an RN. I have read so much about this in medical journals I am sick of it. Germany since 1966 has used IV alpha lipoic acid and has had great luck. The pills do not work and the United States is just now looking into this. People who get CIDP is over 96% men. I am a female. The likelihood of actually having this is slim as a female. My testing was done in 2018. My EMG/Nerve Conduction test. It hurt. It was done after the nerve damage to by body. The EMG/nerve conduction test felt like fire all over my body. The physical therapist can’t use tens units on me either. I have had two biopsies for small fiber neuropathy both positive. I was diagnosed with severe axonal sensorimotor polyneuropathy.
Spinal taps hurt like the dickens. I had one before I lost consciousness with bacterial spinal meningitis. I will never have another one. It had to be patched because of leaking spinal fluid. The only reason I am even considering being tested is I have been positive for over four years for the Epstein Barr virus which is part of CiDP. The Epstein Barr virus is nothing more than the Herpes Virus or mononucleosis which the Herpes Virus when I got with the bacterial spinal meningitis they believe a nurse had it and transferred it to me by not wearing gloves. I had never had cold sores and did not carry the virus. It is not going to change the progression of this disease being tested. My gamma globin levels are low. I took gamma globin from 10-18 until I fell off of my parents insurance. Most people are not as far as I am in the disease or the other percentage it has not affected their organs and they are diabetic. I am not diabetic nor does it run in my family. Due to the neuropathy it is affecting my organs heart, liver, kidney, intestines and the pancreas. I have tremors that are caused by the neuropathy along with lots of dizziness and balance problems. I am reconsidering being tested.
I originally said heck no. The bacterial spinal meningitis left me with a lot of nerve damage as it was. Two weeks unconscious, hallucinations, then severe migraine's, seizures ( I never had prior side effect and seizure meds I am allergic to) and I was on IV antibiotics for three months along with pills for another three months. . I lost the majority of my memory. I had to relearn how to drive, read and write.
There are days I do nothing but fall and my husband has to feed me. I just turned 62 eight days ago. When the neuropathy moved into my heart I was given 8 years to live four of them are gone. Nothing can be done for the bradycardia/tachycardia.
You have to have nerves to shock for a ICD (pacemaker/ defibrillator) I do not have the nerves because of the cardiac autonomic neuropathy. They say you can’t die from this but once it moves into your organs there’s nothing they can do. Yes, they (doctors) finally admitted you can die from it.
What does run in my family is Rheumatoid Arthritis. My grandmother, mother, aunt and my nephew all have it. On top of RA they have Sojourn’s Disease.
Everything is thrown off on me because of the damage neurologically of the bacterial spinal meningitis. We know my neuropathy is autoimmune I tested 13 for RA and you have to test 14 to be considered positive. I also have a positive diagnosis of lupus but no one can find the labs but I do have the butterfly on my face but test negative. The only thing this will do is be another test. We shall see but currently non of my symptoms can be reversed they would have had to begun treatment before it moved into my heart along with when my tremors first began. I do not have the antigens for Parkinson’s and DBS ( Deep Brain Stimulation) does not work on neuropathy patients.
I had IVIG infusion treatments for 6 months twice a week neurologist diagnosed me with MS I had a spinal tap done as part of the testing for MS
She said it showed I had Guillian barre syndrome which is an autoimmune disease as well but affects peripheral nerves
How long did you have IVIG (gamma goblin). It keeps neuropathy from progressing and normally helps you from getting sick. It helps your immune system. Neuropathy weakens the immune system. I was on IVIG therapy from age 10-18. I was told if I had remained on it I would not be in the shape I am in today. It kept me out of the hospital. I stayed in the hospital and was held back a grade due to pneumonia. It does not make the neuropathy better but keeps it from progressing to the stage I am in.
The neuropathy has caused severe tremors (sometimes my husband has to help me drink or eat, he also cuts up my food for me I now have problems choking), can't feel my hands constantly cutting them open, it is in my heart, intestines(gastroparesis), kidneys, liver and pancreas.
It takes approximately six months to see any difference and when you go off of IVIG therapy most people see it progress really fast. That’s why they say you have to remain on it for the rest of your life. No I don’t have Parkinson’s I do not have the antigens. On the list on neuropathy it just says movement disorders under motor neuropathy also have sensory and small fiber neuropathy.
Diagnosed in 2018 and now they are checking me for CIDP. They doctors believe I have had neuropathy since 2002. I was diagnosed with gastroparesis way before neuropathy. The neurologist said that’s the first sign in most people.
Germany has used IV alpha lipoic acid since 1966. The pills don’t work as well and does not stay in your stay but five to six hours. If you take the pills recommended 600 am and 600 pm. There are a lot of brands that add a lot of junk in it. The alpha lipoic acid in the medical journals are
Thioctic Acid as the alpha lipoic Acid.
I had IVIG infusion treatments for 6 months twice a week neurologist diagnosed me with MS I had a spinal tap done as part of the testing for MS
She said it showed I had Guillian barre syndrome which is an autoimmune disease as well but affects peripheral nerves
Hello @blessed09, Welcome to Connect. You mentioned having the IVIG infusion treatments after being diagnosed with MS and Guillain-Barre Syndrome. There are also other discussions on the conditions that you might find helpful to connect with other members sharing your symptoms.
I have 2 Neurologists. Both professors, with completely different ideas on IVIG. I was diagnosed with SFN then LFN was added then It was changed to CIDP …I suspect to get IVIG funded. Who knows .Anyway Prof 1 prescribed Gammunex 300ml every month . I did 7 months then reacted badly to it and had to have 10 days of cortisone to settle things down. Still can’t walk properly and my fingers are still going numb like my feet but it did make me feel just slightly better in myself.
Prof 2 said it wasn’t worth the risk as it changes the viscosity of your blood and too many people were having strokes and don’t do it .. He offered no other treatment so naturally I jumped in for the 7 months IVIG with prof 1 to try and control this insidious disease .
Can’t get to the bottom of who is right here but prof 1 said it could help CIDP but would have no effect on SFN
My GP just rolls his eyes and says bloody neurologists they never agree on things. Guess it depends on their training. My advise is if there is nothing better give it a shot. BUT hydration is the key. Day before start drinking and keep up copious fluids till 2 days after your infusions. Make sure your clinic has a good reputation and your neuro monitors the procedure . Good luck. I hope it helps if you run with it
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.
I have read here that statins can cause neuropathy. i take statins and have neuropathy.
I also read that coq10 may lesson some symptoms. I am now taking 200mg of coq10 a day. I am into day three and feel just a slight improvement. it said it takes two or more weeks to feel improvement. Good luck all.
Connect
Connect
Like
Helpful
Hug
I take a small pill once a day of that, what is your dosage. I have some severe nerve damage in my ankles, possibly a blood disorder or maybe nerve deterioration. Do you think this might help and how much do you take or do you recommend? Thank you for your response.
-
Like -
Helpful -
Hug
1 ReactionDue to all my drug allergies we started off at 200 mgs. The neurologist wants me on 600 am and 600 pm. So currently I am at 400 mgs what ever time of day I take it. The Germans have been using it since 1966.
-
Like -
Helpful -
Hug
2 ReactionsThere are specific tests for CIDP, like spinal fluid and electro muscular tests that are pretty definitive. You should IMO, demand more testing.
-
Like -
Helpful -
Hug
1 ReactionI had IVIG infusion treatments for 6 months twice a week neurologist diagnosed me with MS I had a spinal tap done as part of the testing for MS
She said it showed I had Guillian barre syndrome which is an autoimmune disease as well but affects peripheral nerves
-
Like -
Helpful -
Hug
1 ReactionI know what the testing involves. I am an RN. I have read so much about this in medical journals I am sick of it. Germany since 1966 has used IV alpha lipoic acid and has had great luck. The pills do not work and the United States is just now looking into this. People who get CIDP is over 96% men. I am a female. The likelihood of actually having this is slim as a female. My testing was done in 2018. My EMG/Nerve Conduction test. It hurt. It was done after the nerve damage to by body. The EMG/nerve conduction test felt like fire all over my body. The physical therapist can’t use tens units on me either. I have had two biopsies for small fiber neuropathy both positive. I was diagnosed with severe axonal sensorimotor polyneuropathy.
Spinal taps hurt like the dickens. I had one before I lost consciousness with bacterial spinal meningitis. I will never have another one. It had to be patched because of leaking spinal fluid. The only reason I am even considering being tested is I have been positive for over four years for the Epstein Barr virus which is part of CiDP. The Epstein Barr virus is nothing more than the Herpes Virus or mononucleosis which the Herpes Virus when I got with the bacterial spinal meningitis they believe a nurse had it and transferred it to me by not wearing gloves. I had never had cold sores and did not carry the virus. It is not going to change the progression of this disease being tested. My gamma globin levels are low. I took gamma globin from 10-18 until I fell off of my parents insurance. Most people are not as far as I am in the disease or the other percentage it has not affected their organs and they are diabetic. I am not diabetic nor does it run in my family. Due to the neuropathy it is affecting my organs heart, liver, kidney, intestines and the pancreas. I have tremors that are caused by the neuropathy along with lots of dizziness and balance problems. I am reconsidering being tested.
I originally said heck no. The bacterial spinal meningitis left me with a lot of nerve damage as it was. Two weeks unconscious, hallucinations, then severe migraine's, seizures ( I never had prior side effect and seizure meds I am allergic to) and I was on IV antibiotics for three months along with pills for another three months. . I lost the majority of my memory. I had to relearn how to drive, read and write.
There are days I do nothing but fall and my husband has to feed me. I just turned 62 eight days ago. When the neuropathy moved into my heart I was given 8 years to live four of them are gone. Nothing can be done for the bradycardia/tachycardia.
You have to have nerves to shock for a ICD (pacemaker/ defibrillator) I do not have the nerves because of the cardiac autonomic neuropathy. They say you can’t die from this but once it moves into your organs there’s nothing they can do. Yes, they (doctors) finally admitted you can die from it.
What does run in my family is Rheumatoid Arthritis. My grandmother, mother, aunt and my nephew all have it. On top of RA they have Sojourn’s Disease.
Everything is thrown off on me because of the damage neurologically of the bacterial spinal meningitis. We know my neuropathy is autoimmune I tested 13 for RA and you have to test 14 to be considered positive. I also have a positive diagnosis of lupus but no one can find the labs but I do have the butterfly on my face but test negative. The only thing this will do is be another test. We shall see but currently non of my symptoms can be reversed they would have had to begun treatment before it moved into my heart along with when my tremors first began. I do not have the antigens for Parkinson’s and DBS ( Deep Brain Stimulation) does not work on neuropathy patients.
-
Like -
Helpful -
Hug
3 ReactionsI had IVIG Fluids and it did not help at all.
-
Like -
Helpful -
Hug
3 ReactionsHow long did you have IVIG (gamma goblin). It keeps neuropathy from progressing and normally helps you from getting sick. It helps your immune system. Neuropathy weakens the immune system. I was on IVIG therapy from age 10-18. I was told if I had remained on it I would not be in the shape I am in today. It kept me out of the hospital. I stayed in the hospital and was held back a grade due to pneumonia. It does not make the neuropathy better but keeps it from progressing to the stage I am in.
The neuropathy has caused severe tremors (sometimes my husband has to help me drink or eat, he also cuts up my food for me I now have problems choking), can't feel my hands constantly cutting them open, it is in my heart, intestines(gastroparesis), kidneys, liver and pancreas.
It takes approximately six months to see any difference and when you go off of IVIG therapy most people see it progress really fast. That’s why they say you have to remain on it for the rest of your life. No I don’t have Parkinson’s I do not have the antigens. On the list on neuropathy it just says movement disorders under motor neuropathy also have sensory and small fiber neuropathy.
Diagnosed in 2018 and now they are checking me for CIDP. They doctors believe I have had neuropathy since 2002. I was diagnosed with gastroparesis way before neuropathy. The neurologist said that’s the first sign in most people.
Germany has used IV alpha lipoic acid since 1966. The pills don’t work as well and does not stay in your stay but five to six hours. If you take the pills recommended 600 am and 600 pm. There are a lot of brands that add a lot of junk in it. The alpha lipoic acid in the medical journals are
Thioctic Acid as the alpha lipoic Acid.
-
Like -
Helpful -
Hug
2 ReactionsHello @blessed09, Welcome to Connect. You mentioned having the IVIG infusion treatments after being diagnosed with MS and Guillain-Barre Syndrome. There are also other discussions on the conditions that you might find helpful to connect with other members sharing your symptoms.
--- Multiple Sclerosis (MS) - please introduce yourself: https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/
--- CIDP/GBS: https://connect.mayoclinic.org/discussion/cidpgbs/
Did you find that the IVIG infusion treatments helped with your condition?
-
Like -
Helpful -
Hug
1 ReactionI have 2 Neurologists. Both professors, with completely different ideas on IVIG. I was diagnosed with SFN then LFN was added then It was changed to CIDP …I suspect to get IVIG funded. Who knows .Anyway Prof 1 prescribed Gammunex 300ml every month . I did 7 months then reacted badly to it and had to have 10 days of cortisone to settle things down. Still can’t walk properly and my fingers are still going numb like my feet but it did make me feel just slightly better in myself.
Prof 2 said it wasn’t worth the risk as it changes the viscosity of your blood and too many people were having strokes and don’t do it .. He offered no other treatment so naturally I jumped in for the 7 months IVIG with prof 1 to try and control this insidious disease .
Can’t get to the bottom of who is right here but prof 1 said it could help CIDP but would have no effect on SFN
My GP just rolls his eyes and says bloody neurologists they never agree on things. Guess it depends on their training. My advise is if there is nothing better give it a shot. BUT hydration is the key. Day before start drinking and keep up copious fluids till 2 days after your infusions. Make sure your clinic has a good reputation and your neuro monitors the procedure . Good luck. I hope it helps if you run with it
-
Like -
Helpful -
Hug
2 ReactionsI have read here that statins can cause neuropathy. i take statins and have neuropathy.
I also read that coq10 may lesson some symptoms. I am now taking 200mg of coq10 a day. I am into day three and feel just a slight improvement. it said it takes two or more weeks to feel improvement. Good luck all.
-
Like -
Helpful -
Hug
1 Reaction