I think I accidentally "hijacked" someone else's discussion as a result of responding to them, so I moved it back here... sorry about that!
I know everyone’s symptoms are different and our body’s react in different ways. But I just had some additional questions if anyone is up for answering based on their experience:
1. I had my initial IVIG treatments on 12/27 – 12/31/2014. I know it works for some and not for others. I’ve also read that for those who it does work for usually see some changes anywhere between 10 days to 4 weeks. I’m 5 days past my last IVIG and actually feel my legs have gotten weaker. Is it too early to give up hope that I could possibly see some improvement down the line while things seem to be getting a bit worse?
2. One of the most frustrating parts of all this for me is my speech. It has become so very nasal and hard to talk. I did have a response from someone here who had nasal speech as well and who had success with IVIG that helped him. In investigating bulbar issues as it pertains to CIDP I read that “Cranial nerve and bulbar involvement occur in 10 to 20 percent of patients.” I was curious to see how many other members here have experienced issues with nasal / breathy speech? I also battle issues managing my saliva quite often that leads to choking.
Thank you.
soccerdad
yes. i had the exact same symptoms. i now call my CIDP, 'ALS-lite' in honor of the PCPs & neurologist who misdiagnosed it.
CIDP is not that complicated. A voltage-threshhold from the brain or anterior horn of the spinal column must polarize the neuron signal process: a calcium gate -20mV then goes to a potassium gate with +70mV, all within the myelin (myelin is like conduit) along with the Nodes of Ranveie (think capacitors). The signal is either/or... the voltage potentials must be reached or no signal reaches the muscles, or no signal is generated from a sensory nerve.
There are ten of thousand of axons in bundles, so some signal will reach a muscle, but it will be weakened if the myelin is damaged, unraveled. the foot nerves are very long, so the most damage, weakness it usualy there.
schawan cells will remyelinate the axons, over weeks or months, if the demeylixation is slowed or stopped, then healing commences. or it doesn't if the myelin has wrapped too many times and creates onion bulbs in the layered meylin, between the Nodes of Ranvie. or CIDP damages the axon.
KEY TERMS-
>>>SENSORY NERVES GO UP TO THE SPINE/BRAIN (pain, temperature, etc).
>>>MOTOR NERVES GO DOWN TO THE MUSCLES (motion, locomotion).
If you think deep and extrapolate, you'll understand everything you list.
CIDP is easier to live with if you don't complicate it. the body is neuro-muscular, or it isn't, or it isn't by degrees.