Reply To: Elevated sedimentation rate
Thanks for writing back.
Nobody would doubt that you have severe neuropathy.
I wrote to you to let you know that there is hope.
Especially in your case, which I believe is very similar to my own. I have also lost measurable nerve function of 80% in some nerves in my legs.
Lets be open minded and as an example look at conditions which cause symptoms and EMG results we both experience like Transverse Myelitis https://www.mayoclinic.org/diseases-conditions/transverse-myelitis/symptoms-causes/syc-20354726
Basically what this means is yes, there are conditions which can strip the Myelin of your nerves, call it CIDP or otherwise.
The last 3 doctors and practitioners I saw all agreed that continuous aggravation of a nerve can cause enough inflammation which if left untreated can cause the symptoms I have, including reduced nerve conduction. They proved their theory by reducing my symptoms by 30% so far.
I believe your new neurologist may be on to something, you just need to find the right person to treat it.
If you look at your history you may have to agree that the potential is very high that your DR is correct and it is caused by your back. Your CIDP starting after having a pelvis operation is just too much of a coincidence. Having CIDP or neuropathy does not rule out that it is caused by the back, hip or pelvis and in your case that may be in your favour because the cause could be treated and potentially reducing your current symptoms by a great margin.
I am seeing my neurologist today and shall update about future developments.