Please explain more details regarding ‘..after a failed attempt at IVIG.’

One of my doctors said to me, ‘you need more IVIG, more often. Proved to be accurate. I was on infusion once per week for a time. However, my MADSAM, Lewis-Sumner type was still slowly progressive.

You might get some answers if you start your own topic in the Main Forum. Years ago ‘they’ used to let us contact each other. Apparently there were some bad apples causing trouble with other members and that feature was removed and is no longer available. As far as I know.

Presumably you are posting here because the diagnosis is GBS. However, the talk of removing her from life support suggests otherwise.

I have heard, and read, that it is not unusual to be hospitalized. In fact, the information on this website states, in part:

“GBS in its early stages is unpredictable, so except in very mild cases, most newly diagnosed patients are hospitalized. Usually, a new case of GBS is admitted to ICU (Intensive Care) to monitor breathing and other body functions until the disease is stabilized”

There should be a team of doctors, including a neurologist, and treatment should be aggressively initiated.

Hope the best for your mother. And you.

Recall that every condition and every patient is different. Ask your doctor bout those muscle groups. Perhaps they can be tested. At any rate I found: “About 30 percent of those with Guillain-Barré still have a residual weakness after 3 years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack.”

Best thing is to ask your doctor.

Ditto on the steroid question. It ties in with long term use and age. For example, an NIH article says: “Steroid-induced osteoporosis remained a problem, especially in older patients.”

Sorry to say, welcome to the club. Insurance approval is a tedious, ever changing set of hoops to jump through. Your medical provider will handle that. A spinal tap is not always conclusive. Other criteria may be used to suggest a diagnosis.

Recommend you read this entire article by an expert and one of the members of the GBS-CIDP Global Medical Advisory Board Richard A. Lewis, MD.

updated June 2 2017: http://emedicine.medscape.com/article/1172965-overview

1. Do compression socks help?
No, not for me.

2. Can CIDP really be a B12 deficiency? It seems to me that the myelin sheath in made up of B12, B1, and B6 so if you can’t absorb those vitamins then wouldn’t your sheath become weak? How is it that neurologically CIDP presents different than a B12 deficiency?
There are many forms of peripheral neuropathy. Let your physician sort out the cause and the diagnosis.

3. Has anyone tried lithium for CIDP? I think there are different types of lithium so the one I’m taking about occurs naturally in the body.
I have not heard of this. However, “The ALS Association is funding a major clinical trial to determine whether lithium can slow disease progression in patients in the early stages of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.” This is a study based on changes in the brain and spinal cord, not really applicable to immune mediated myelin sheath damage.

4. Has anyone who is still capable of driving/walking tried to get a handicap sticker for CIDP?
You’ll have to met your state and your doctor’s criteria for Motor Vehicle disability Placards. In my case, I met the Social Security Definition of Disability first. Years later, my primary doctor agreed to issue a DMV (Department of Motor Vehicles) certificate.

5. Does exercise/stretching actually work because it seems to make my muscles worse?
Yes and yes. Exercise, overdone, makes things worse. You’ll have to find your own limits by trial and error. Not exercising is not an option.

6. If CIDP is an autoimmune disease then wouldn’t it be something genetically we have always had? If so then how is it possible to catch it in early stages? I guess that means you catch it during one of the first flare-ups?
CIDP is an acquired condition. This means you just get it. Nothing genetic about it. Genetic conditions such as Charcot-Marie Tooth and Hereditary neuropathy with liability to pressure palsy (HNPP) should be ruled out if your doctors deems it necessary. However, because they are genetic you might be aware of a family history of these problems.

7. How long do IVIg treatments last? How many hours sitting? Can you walk around while you’re plugged in and do stuff? Will I be able to go to work the day following an IVIg treatment?
The first, loading dose, and ongoing doses of IVIG will be determined by your doctor. The total amount of fluid is calculate on your ideal body weight (or, should be). The actual dose (how much) and rate infused are up to your doctor and varies. My first infusion was hospital based over 5 days. No, I was not allowed to walk around. On-going doses, for me, averaged 4 hours. However, every infusion total load and dose is individualized. Yes, you you should be able to return to normal activities almost immediately. However, everyone reacts differently.