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 A small amount of fluid is withdrawn from the spinal canal in your lower back.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”

My reactions to IVIG infusion were ameliorated by a lower infusion rate, lots of water the day before and of treatment. Also, doctor prescribed benadryl and NSAID just prior to treatment.

I always napped after treatment and had low grade headaches for days afterward, regardless.

You might get a response if you start your own thread. You have hijacked a historical topic about Prednisolone not IVIG.

Hello xochi. Older age is a factor in recovery from GBS. Yet, as GH as alluded to, it depends on the particulars of your case. Factors such as initial diagnosis, time to peak severity and how soon treatment was initiated all play a role in recovery.

Regretfully, a small percentage of cases do not experience rapid or complete recovery. I do not understand the IVIG treatment. Did you have IVIG initially? Why, if you are receiving 5 consecutive treatments are they being given over 2 two days, two weeks apart?

Your recovery and prognosis is a topic you and your doctor should discuss. Perhaps you would benefit from a 2nd opinion. Talk with your doctor.

I do not know what I PLATO means.

One of the main reasons is that GBS is not a single condition. Numerous studies have reported something such as this: ” Little is known about the long term prognosis for patients the (sic) severe acute motor axonal neuropathy (AMAN) form of Guillain–Barré syndrome (GBS), unlike those with acute inflammatory demyelinating neuropathy (AIDP).”

There may be only demylenation, linked to AIDP, or there may be axonal damage which runs the length of the nerve, as in AMAN.

Further, there are other factors linked to words associated with specialists and Journals of Neurology. Such as: association with anti-ganglioside antibodies, Campylobacter jejuni infection, axonal degeneration, Wallerian-like degeneration in the ventral roots and damage to Nodes of Ranier. Also, preceding gastroenteritis or collateral sprouting of surviving axons.

Finally consider this: “In our study, 8% of the 97 patients with GBS (six AMAN and two AIDP) could not walk independently at six months after onset. In the AMAN group, four of the six could walk independently one year after onset, one could walk independently 28 months after onset, and the remaining patient could walk 57 months after onset. Generally, it is believed that no further recovery can be expected two to three years after GBS”

the study is here- http://jnnp.bmj.com/content/76/5/719

There are other studies. Do a web search such as I did- guillain barre syndrome recovery patterns.

Good luck

B, you are 100% correct.

Not only are forums searchable by non-members they are often routinely searched, automatically, and forever by web crawlers bots and specifically google bot. “Bots” find, and therefore, they know, everything.

I agree with you, it is imprudent to list personal identifiable information anywhere you don’t absolutely have to.

On the other hand, to say, ‘let’s meet Tuesday next week between 10 and 11 am at the main street Starbucks in Briggsdale’ is probably ok.

Well, I have a different outlook on the cause and effect of the inflammation aspect of CIDP.

The do-dads (Chronically) attack (Inflammatory) the myelin (Demyelinating) sheath of one or more peripheral nerves (Polyneuropathy), eventually affecting proper muscle function. Because the muscles lose the ability to contract properly, they don’t. Left alone long enough the muscles atrophy. It’s not a question of muscle tissue becoming inflamed.

If you were experiencing fasiculations or muscle cramps that would be expected.

Oh, well, everybody’s disease is different.

Everybody’s reaction to medicine and to disease is different.

I had severe cramping, particularly in the calves, quads and hamstrings, but also in my hands, fingers and forearms whenever I did too much.

Too much what? Daily living, eating, using chopsticks (until I couldn’t hold them any longer) walking, climbing ladders, climbing stairs, shopping, vacuuming. Doesn’t matter. Pay attention to what and how much you do so you’ll know later when the cramps come which activity caused them.

Monitor yourself closely. Perhaps you feel better after infusion so you become even more active.

If you are getting worse, I question your conclusion that you might ask for IVIG less often.