April 6, 2015 at 9:08 pm
9 years out with CIDP. I’ve been posting in this forum in the last week, but don’t want to go through the whole story again, but will if anyone asks.
I have had pain in my lower legs and feet since the onset of this whole thing.
Here is a new development, starting about 3 weeks ago. Pain starts up in my feet, enveloping the entire foot. Periodically, I will feel the pain increase, followed by a stomach spasm. This feels like I am tightening my stomach muscles in anticipation of taking a punch. (Of course, there is no punch.) The stomach seems to make me grunt, involuntarily. Then my upper chest tightens, then my throat, and finally I utter a grunt. I become doubled over if standing or walking. If in bed, I roll into a fetal position and involuntarily whimper. I will whimper when sleeping or napping for an hour, but I am barely aware of it. My wife tells me after I wake up.
What the heck is this?
April 7, 2015 at 12:29 am
Man, I don’t know. First advice! If you haven’t I would recommend going to a Major US City’s University based Medical Center, if you haven’t already. From my experience I had 3 MRI’s and on the last one (Cervical) they found Stenosis, I had issues with loose bowels, severe chest and center back pains, extreme shortness of breath, severe limp and complete left leg and left body weakness and numbness on my feet.
The Surgery (C5 & C6 ACDF) resolved virtually all issues with the exception of the numbness on my feet and it appears to be much better now. All the Neurologist attribute it to the IVIG, but from my point of view the IVIG did little or nothing and am stopping it after 4 more infusions. Just to see what transpires. I have noticed that my emotional state, seems to control my neuropathy. If I become upset or angry it inflames my feet. Calm and rested everything is fine. You might find yourself creating your own downward spiral as I had.
June 4, 2015 at 3:17 pm
the muscles in the abdomen; abdominals, are muscles that are nerved-up by the thoracic spine. the symptom also seem to indicate phrenic nerve involvement. these are anatomical nerve related issues. usually CIDP nerves-up the cervical & lumbar-sacral first, as they are the largest part of the spinal column (more nerve roots to inflame). However, CIDP is progressive and after a few years the thoracic spinal roots become inflamed.
The sensations you feel, in varied locations, are because the anterior horn of the spinal column divides nerve impulse transmission to more then one nerve root. Redundant nerve systems and pathways, however portions of nerve roots can be demyelinated causing conflicting muscle coordination, pain, etc.
Here’s a resource:
June 4, 2015 at 3:36 pm
You can extrapolate from this to understand nerve propagation in other areas of the body. In my understanding of CIDP, the inflammation usually starts at a proximal nerve/muscle junction, then goes distal and then postal. From this graphic one can see how specific muscles are influenced, with surrounding muscles effected less. Pain is purely sensory and works in conjunction with the reflex arc to motivate the motor neurons to tell the sensory neurons, brain and mouth to say, “ouch!”.
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