Hi everyone! I’m new with questions :)

I want to extend my compassion to all of you suffering from this and other related conditions. I came onboard for some help and clarification. Expecting it from the md’s is sometimes a tall order. And I’ve learned that pts have more answers than most. I am not expecting a dx, just some help sorting thru this!!!

So maybe you guys can guide me a little. I am a 41yr gal in NYC. I have a major sleep disorder, hyperadrenergic orthostatic tachycardia syndrome, seizures, fatigue, spinal stenosis, chronic pain, gastro, small fiber neuro, and you know the rest…. these things have been going on as long as I can remember.

My question is about cidp and getting a dx. Can you guys translate these emg readings?

Sorry if this will be long, I just have no idea who to see, or what type of specialist. My current neuro knows nothing of autonomic disorders, or why I have had the seizures, and I am trying to narrow down the field. My cardio is great, but again, I need to connect the dots. All this could be autonomic dystfunction and not cidp at all. But maybe you can help clarify 😉

Ok, here goes…What’s up with the F wave? Or lack thereof? My neuro in ’06 thought I had cidp based on her emg and progression of damage from 2002. Her summary: “abnormal studies upper/lower extremeties. neurophysiologic evidence for moderate sensory mototr demyelinating peripheral polyneuropathy.” I won’t elaborate on findings, but briefly left peroneal F wave abnormal NR. Right peroneal F abnormal NR. Left tib F prolonged latency, right tib F prolonged lat. Remaining F waves normal.

So, she sent me to Mayo Minn. for the POTS and possible cidp. Their emg was much quicker than hers, and we mostly concentrated on the POTS. Their findings re: nerve damage: “mild length dependent axonal neuropathy, normal conductions, some evidence of distal denervation. sweat test 2% anhidrosis w/ distal distribution. Summary: the peroneal F wave was not obtainable which can be normal however given her anxiety (lol) and substantial compound muscle action potential amplitutde, it is somewhat surprising that the F wave was not elicited. Needle exam revealed large motor unit potentials in distal leg muscles with fibrillation potentials in the foot. Evidence of length dependent axon. neuro with No evidence of sensory motor involvement suggesting small fiber component.”

And lastly, this year, the new neuro who i saw for the seizures, did another emg and also mentioned likely small fiber neuro. He said: “No evidence of polyneuropathy, No evidence of lumbosacral radiculopathy.” From the study/chart itself, I will just read what I see about the F waves. sensory study, saphenous nerve, ankle, left and right side absent. Superperoneal nerve, left and right side absent. F wave study: peroneal EDB ankle, F wave absent bilaterally.

Now that I’ve made you all dizzy reading this, can anyone tell me what that means? Or why my first neuro thought it was cidp, and why the others did not? What is a small fiber neuropathy? I have blood pooling in the legs due to pots, pain, tingling, buzzing from knees down. Have trouble climbing stairs, walking too long etc. But I also found out i have early onset emphysema.

I am really sorry but no one has ever explained any of this to me. Is it something I pursue, or just find a new neuro for the autonimic issues?

Thanks a million and sooooooo sorry for the length of this!!!!!
Happy Monday everyone!

Tia