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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.
AIDP, by definition, is GBS. In this context the D stands for demyelinating. The answer to your question about axons is best found with an online search. Online you will be able to find photographs of nerve structures and read comprehensive descriptions.
Simply put, the myelin is the covering for nerve bundles. The motor axons are a part of the nerve bundle. In the event there is only axonal damage this is a special subset of GBS and is described thusly: “Acute motor axonal neuropathy is the most frequent axonal variant of Guillain-Barré syndrome (GBS) and is often used synonymously with the term axonal GBS.”
Demyelination, left unchecked and untreated may also result in axonal damage. This seems to be what is stated in the portion of the report you provided. Long term axonal damage my slowly recover, if at all. The long term loss of axons is linked to muscle atrophy.
January is not so far off. At any rate, why not call the doctor’s office and ask your question? Who knows, they may actually reply to you.
The proper interpretation of EMG and NCV studies is complex.
cer100: “Axon loss: Amplitude of compound muscle action potential (CMAP) correlates with the number of motor nerve axons, and similarly, the amplitude of the sensory nerve action potential (SNAP) reflects the number of sensory nerve axons. Lesions causing axon loss generally result in reduced CMAP and SNAP amplitudes.”
CMAP and SNAP are diagnostic components of EMG/NCV testing.
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
I’ve had success asking people for help when I’m out and about. At home I use a tool such as: https://www.amazon.com/Rubber-Strap-Wrench-6-in/dp/B0002H338C/ref=sr_1_6?s=automotive&ie=UTF8&qid=1508191810&sr=1-6&keywords=small+strap+wrench
I added pulls to all my zippers, used a key turning aid and and have looked at the Sammons Preston medical supply catalog. Expensive, I thought,.
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.
B,
I empathize with the desire for privacy. Facebook accounts require your real name, do they not?
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.
I notice no one has replied. It’s been a week. Well, what kind of inflammation? Where in the body is it? What areas are involved and how do you know the pain is from inflammation?
Turmeric, particularly curcumin seems to mostly have health benefits praised by the people selling the stuff. However, one meta-analysis reported to the NIH states “8–12 weeks of standardized turmeric extracts (typically 1000 mg/day of curcumin) treatment can reduce arthritis symptoms (mainly pain and inflammation-related symptoms) and result in similar improvements of the symptoms as ibuprofen and diclofenac sodium.
Note- the report also states the sample size is too small to be conclusive.
It’s main use is for arthritis, osteoarthritis and the study authors state those conditions have similarities to auto immune conditions.
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.
Centers of Excellence are listed on this website. located here:
What is the relevance of one month and relapse? How does one exclude the other?
Please explain more details regarding ‘..after a failed attempt at IVIG.’
Yes, it is possible for some patients to experience remission. Unfortunately some other patients have a remitting-relapsing form of the disease.
It is not unusual for doctors to spread out infusions to find out if your CIDP characteristics have changed. I agree it is a little bit disconcerting if your doctor truly intends to start over from ground zero as if he didn’t know what was causing your
symptoms.It’s second opinion time from another doctor, better yet from a Center of Excellence if you are near one.