Alcohol is a known contributor to nerve damage. However, that result seems more appropriate to chronic abusers, not occasional users. Personally, I totally stopped alcohol intake. Of course, you’d likely never know the result because there are too many other variables.

Good luck with your 2nd opinion.

As a general note- I have worn a single customized plastic AFO since 1980. I have worn bi-lateral customized AFO’s since the late 1980’s. I have the following comments:

1. AFO’s should not pinch, squeeze, slide or otherwise cause pain.
2. AFO fit should be re-evaluated periodically.
3. If you get a poor fit or poor service, change service providers.
4. I would much rather wear my AFO’s then stub my big toes, curling them under my feet and then walking on them.
5. I would rather wear AFO’s than trip over a small imperfection in the walking surface and fall flat on my face.
6. AFO’s are a nuisance when driving, so I take them off.
7. If I do not wear knee high nylon ‘stockings’ the plastic rubs and then burns the skin on my calves. Ouch.
8. AFO’s are a nuisance to wear while standing straight up and still. They are designed with a bias that causes undue pressure when not moving. So, I avoid standing still, preferring to not deal with the bias.

Jill- thank you. No need to dig up paperwork. Your description is adequate. It also explains why I was only offered pins. Both my left and right tibials were compromised.

paronnee- thank you for the explanation and feedback.

And for Jill- could you be a little more specific? Surgery for GBS/CIDP muscle wasting, nerve signal loss induced foot drop sounds as if the ankles were pinned. What other options are there? Thanks if you share.

What’s the phrase I’m looking for? I like GH’s reply, it is concise, succinct and meaningful.

I’m feeling like chatty cathy right now.

Do you have any information on what basis the 2nd neuro made the diagnosis? For example, according to the literature did you have an MRI showing lesions in the spinal cord? In some people a Lumbar Puncture (LP) will have both elevated protein and elevated white blood cells. Sometimes a blood test looking for other diseases and the presence of certain autoantibodies is sampled.

In any event, apparently, the treatment for Transverse mhyelitis and CIDP/GBS are all similar. Specifically, Intravenous corticosteroid drugs, Plasma exchange therapy, Intravenous immunoglobulin (IVIG), Pain medicines. Differing treatments include anti-virals.

Further, it is unlikely that your description of left foot weakness, right foot weakness and left hand weakness matches the 1st neuro’s diagnosis of “bilateral axonal damage of only one nerve” because you’ve reported muscle weakness in these multiple limbs.

As B stated, generally shortness of breath is not a side effect of IVIG. And as B and GH asked- what is your follow up plan?

One 5 day set of treatment is not likely to be productive in the long term for either condition.

Even if CIDP causes, or is suspected to have caused, elevated CPK levels I would want to know at least two things.

1. Which form is CPK is high?- CPK is made of three slightly different substances:
CPK-1 (also called CPK-BB) is found mostly in the brain and lungs
CPK-2 (also called CPK-MB) is found mostly in the heart
CPK-3 (also called CPK-MM) is found mostly in skeletal muscle

2. Why is the CPK high? That is, rather than accept it is due to CIDP I would discuss with my doctor testing to rule out all of the more common factors. Specifically, heart attack, statin meds, intense muscle workout, alcohol, viruses, hereditary conditions and certain autoimmune diseases that cause inflammation in the muscle such as polymyositis or dermatomyositis.

Just to be clear-

1. No spinal tap.
2. No EMG.
3. No NCV.
4. No treatment.

From a Mayo Clinic discussion on diagnosing GBS: “Spinal tap (lumbar puncture). A small amount of fluid is withdrawn from the spinal canal in your lower back. The fluid is tested for a type of change that commonly occurs in people who have Guillain-Barre syndrome.
Electromyography. Thin-needle electrodes are inserted into the muscles your doctor wants to study. The electrodes measure nerve activity in the muscles.
Nerve conduction studies. Electrodes are taped to the skin above your nerves. A small shock is passed through the nerve to measure the speed of nerve signals.”

And then, also from Mayo Clinic- recovery- “Although some people can take months and even years to recover, most people with Guillain-Barre syndrome experience this general timeline:

After the first signs and symptoms, the condition tends to progressively worsen for about two weeks Symptoms reach a plateau within four weeks Recovery begins, usually lasting six to 12 months, though for some people it could take as long as three years

Finally, from Mayo Clinic: “There’s no cure for Guillain-Barre syndrome. But two types of treatments can speed recovery and reduce the severity of the illness”