September 1, 2019 at 1:35 am #117120
I have been doing some research on alpha lipoic acid for CIDP. Most of the posts I have come across on here are from many years ago like 2010. I was wondering if currently anyone is using this for their symptoms? I also was wondering if taking this if anyone knows if this could interfere with EMG or NCS? My husband was diagnosed with CIDP and is gradually getting worse, our insurance denied the Ivig treatments due to the EMG study not being abnormal so I think they will need to do it at a later date as his symptoms had only started aprox 2 weeks before she did the EMG. So we would be interested in starting this alpha lipoic acid but we don’t want it to interfere with the studies. Please if anyone knows please respond.
September 1, 2019 at 2:59 pm #117121
Your husband may wish to consider a combination of Vitamin B12 (Methylcobalamin 5000MCG) and Alpha Lipoic Acid (1200MG – 1800MG) daily to help with peripheral neuropathy. These over-the-counter supplements have helped some who have suffered from GBS/CIDP and have few side effects.
ALA was the subject of a CIDP Clinical trial started in 2015 being conducted by the University of Oregon. They haven’t posted any results yet. The clinical trial is here:
ALA was studied and reported on in this article:
Not all ALA is alike and the one I researched and take is here:
I’ve been taking ALA 1200MG per day along with B12 and it seems to help me. Others have reported a return of minor symptoms when they discontinued it, and symptoms went away when they restarted taking it.
ALA could improve the results from a Nerve Conduction Velocity (NCV) test, but isn’t likely to.
September 1, 2019 at 3:31 pm #117122
Here is a ALA Clinical trial that was completed:
September 1, 2019 at 3:50 pm #117123
Thank you Jim I appreciate the response. He is not able to take vit b12 as his levels were quite high from supplementing. He really wants to start taking them be if it could affect ncs we are leery as we know he needs the ivig right now. How long does it take for cidp to show up on emg and ncs?
September 1, 2019 at 6:28 pm #117127
An NCV is one of the ways of diagnosing CIDP. But an NCV test may not distinguish the disease in its early stages, there needs to be sufficient Axonal and/or Myelin damage before the NCV can detect it.
Has your husband had a spinal tap to analyze cerebrospinal fluid for elevated protein levels?
CIDP and its variants can be difficult to diagnose exactly. Even assessing the results of an NCV is a bit of an art and you need to have an experienced neurologist interpreting the results. Are you near a Center of Excellence?
Usually, all the tests must be made to confirm the presence of CIDP. Neurologists that have specialized in treating CIDP know this and the signs to look for. You may wish to read and share the following publication with your doctor, it lists other diagnostic criteria for identifying the disease:
I have had all the tests mentioned accept a nerve biopsy, which, in my opinion, can be saved for last if needed at all.
A Nerve Conduction Velocity Study (NCV or NCS) may be most beneficial in diagnosing CIDP/GBS.
Conduction/velocity studies are tests that measure how well individual nerves can send an electrical signal from the spinal cord to the muscles. Nerve conduction studies are often used to help diagnose nerve disorders, such as carpal tunnel syndrome or Guillain-Barré syndrome.
During a nerve conduction test, a health professional places a shock-emitting electrode directly over the nerve to be studied, and a recording electrode over the muscles supplied by that nerve. The shock-emitting electrode sends repeated, brief electrical pulses to the nerve, and the recording electrode records the time it takes for the muscle to contract in response to the electrical pulse.
Diagnostic uses for nerve conduction studies include:
• Detecting and evaluating damage to the peripheral nervous system, which includes all the nerves that lead away from the brain and spinal cord and the smaller nerves that branch out from those nerves.
• Identifying the cause of abnormal sensations, such as numbness, tingling, or pain.
The electrodes often penetrate the skin and can be briefly painful. Sometimes I had a little bleeding following being poked. If one is on blood thinners (Coumadin, etc.) the technician needs to be made aware of it. Ask your doctor if you can take a pain reliever (Tylenol, etc.) in advance of the study to minimize discomfort. Wear loose fitting clothing; you may be given a hospital gown to wear anyway. Since electrodes will be placed on your skin, make sure the surface is clean and free of lotions and oils that might interfere with results. Ice the area after the tests to help reduce any discomfort.
You may wish to get a second NCV test interpreted by a neurologist experienced with GBS/CIDP.
September 4, 2019 at 12:20 am #117129cer100Participant
I am already taking the B12 1000mcg. Had a neuro suggest the alpha lipoic acid and had another neuromuscular spefialist say it would not help. Still considering but have not started it.
September 4, 2019 at 1:30 pm #117132
Yes he had a spinal tap a couple weeks ago and it was elevated 174.
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