Can anyone relate to what I am going through? I'm feeling quite alone lately, and concerned, or even "scared" because after years on IVIG and having been diagnosed with CIDP, my doctor moved and one of the partners took over my care.
The new doctor did a follow-up EMG/NCV study, and started saying in front of me and the EMG technician that I don't have CIDP. He said "You have severe nerve damage and are clearly in a lot of pain. You have a lot of axon damage, but your motor nerves are getting better than they were".
He then mentioned something under his breath, and I asked him to clarify, and he said "I'm not sure you have CIDP". I asked "After three years, what else could this be?" He says "Idiopathic neuropathy".
So, from what I can tell, he is "trading" my known diagnosis, made by a skilled neurologist and neuropathologist, for the old "idiopathic" line. One doctor I know calls it "Idiotpathic" because "It means we doctors don't know anything".
After a long talk, and after the new neuro telling me "You should be walking better than you do", I asked him why, if I don't have CIDP, would my 3 years of IVIG treatment seem to have helped the motor nerve speeds? He had no answer, and has kept me on the same IVIG therapy I was on before.
To me, that means he didn't actually change my diagnosis "on paper" or insurance wouldn't pay for IVIG, and it also means that if he DID change my diagnosis after all these years, then the neurology group would have had to admit misdiagnosing me, either 3 years ago, or now, when the "boy genius" changed his mind.
He told me that my EMG doesn't show "Very much active demyelination". I asked "So, how do my axons die and get damaged if they myelin is intact?" Again, no answer.
Has anyone else experienced this? I mean, some improvement but with the pain and numbness in my legs and feet, still "walk like a duck" and have to use a walker, alternating to a cane, and sometimes a scooter when more than 50 feet or so, because my legs get so heavy feeling that I fall down.
Also, has anyone had a doctor change their diagnosis like this? I'm confused, and if this doctor keeps "playing around" with my diagnoses and saying I "should" be able to walk better, then have I gone off the deep end and I've just gone crazy and can't walk right? Is it in my head? I mean, I really do fall, I have multiple types of neuropathy, and the IVIg is slowly working, at least on motor stuff, but I still cannot feel my extremities except for shooting pain, pins & needles, and all that neuropathy stuff. Plus, I have no idea where my feet are when I'm walking. I can't feel them, so I can't tell where and when to take steps, so how does all this add up?
Please, help me out.
Should I go to a different doctor for a second opinion?
Has anyone's EMG/NCV shown positive changes in motor but worsening sensory/axonal? Has anyone else had a doctor want to change their diagnosis because the IVIg helped them?
I don't have anything to gain by "faking" symptoms or not walking correctly. It's humiliating and embarrassing to have my wife help me out of the car, or out of a chair, or having to catch me when I start to fall.
Why do so many doctors seem oblivious to the problems we CIDP patients suffer, and why do they try to "blame" us for these conditions out of our control?
I asked him about physiotherapy, and he agreed it would help "But not now, later". What's THAT supposed to do for me?
Thank you for letting me vent, and for any help you can give me.