Kind of explains why AIDP, or acute GBS has such a good prognosis, as usually it is only the myelin sheath destroyed, not the axon itself. Whereas, in CIDP, when nerves are constantly being attacked & then heal (the relapsing/remitting form), or in the progressive form of CIDP whereas there is no improvement, it is usually the axons themselves being destroyed. I guess I accepted the fact long ago that I have a certain amount of axonal damage, wish they could find a way to replace them?
[I]I find it interesting that you seem to assume that I wanted this doctor to work “for free”. You know what they say about “assuming”, right?[/I] 😡
I offered to pay for his time; I offered to complete as much of the form as possible myself; I asked what his requirements would be to complete the form. Nothing. I have visited the man over 200 times in 10 years; between co-pays and insurance claims, I really think he’s made enough money to complete a two-page document for me. No narrative was required; two pages. That’s it. It wasn’t an SSDI application, it was a simple Long-Term Disability application for a major US insurer. I agree that doctors should be adequately compensated. I also believe that a “doctor/patient relationship” should mean something. I’ve gone to this doctor, as have my wife and kids, for over ten years. And then, when I need his help the most, he turns his back on me? Not…”Okay, I’ll complete the paperwork; here’s my fee”, but rather, “I’ve never done it, and I never will. Period.” I would have been willing to pay a reasonable price for his time; that wasn’t even a consideration though. The reason I asked him, btw, was because of our long-standing relationship. He is the one that has referred me to every specialist, and he is the one that is applying the treatments that most of them have ordered. He knows EVERY ASPECT of my medical history, better than any other physician. My rheumatologist had only seen me twice to that point, and I assumed she might balk at completing the paperwork. She did not; she completed it…and SHE DIDN’T CHARGE A DIME! She knows she’ll more than make up whatever it cost her, in the long run.
Every other health professional, including other doctors, have been appalled at how my request was handled, and all have suggested I run, not walk, to another doctor.
I filed a complaint with the State Medical Licensing Board, the Hospital network the doctor represents, and the doctor himself. As I said, and as I pointed out in my letter…no amount of money would have changed his mind; he simply didn’t want to be bothered. So, I’ll accomodate him, and never bother him ever again.
Well there seem to be a few of us that are having problems/concerns with our throats.
I hope more people will chime in, it is interesting…. I thought I was losing it!
Yes I will go get my thyroid checked again,
Thanks for the replies so far,
Another question, are you all taking gabapentin(neurontin)
Rhonda from Canada
I was a little disappointed last week when I saw the “new” neurologist; he seemed to think that what I’m going through may not even be a peripheral neuropathy, let alone CIDP. He said he thought it was probably either musculo-skeletal or pulmonary in origin. I couldn’t believe it! So, needless to say, I was depressed over the weekend as I thought about how I can’t even get two doctors to agree on what I “don’t” have, let alone what I “do” have.
But, today, I was speaking to an old friend, and she asked about my health. I explained that things were getting worse, rather than better, and she asked about my symptoms. She was shocked, and started telling me about her daughter. Her daughter has struggled for two years going from doctor to doctor, with numbness and tingling in her arms, legs, and face, extreme fatigue, etc., etc., etc. She was convinced she had MS. She went to a local neurologist, who ran an exhaustive battery of tests, and then called her, asking her to come to his office, because he KNEW what was causing her symptoms. My friend, her mom, said she called her, bawling, because she just KNEW he was going to tell her she had MS.
Turns out she has a PFO…Patent Foramen Ovale…a hole in her heart! She is having a “minor” surgery tomorrow to implant a screen device that will allow tissue to start growing onto it, and will completely close the hole within six months. The cardiologist said she’d feel like a completely new person when it was all said and done. It seems that about 30% of all humans have this, but it is only detected when it causes other symptoms, and even then, it’s overlooked in a lot of cases. Patients go from one doctor to another, much like with CIDP, and are often looked at like they’re crazy, hypochondriacs, drug-seekers, etc.
The reason I’m hopeful is NOT because I necessarily think I have a hole in my heart, but because of the way her neuro handled everything. He was determined to find the cause; ran several days worth of tests, and then spent a few more days pouring through the data. Guess who I’m going to be calling for an appointment tomorrow!! 😀 I DO have to say, though, there are a lot of things that are ringing bells; my last brain MRI showed four lesions, and the radiology report stated that they appeared to be the type caused by “ischemic” events. I had coffee with another old friend last week, and she’s a long-time pulmonary ICU nurse; one of the first things she said was, “[Elmo], your fingers are “clubbing”…did you know that?” I told her I’d heard the term, but wasn’t aware what it meant. She explained it to me. Ischemic events and “clubbing” fingers are two of the most prominent signs of a PFO, so…who knows? :rolleyes:
So, maybe…just maybe…there ARE doctors out there that are willing to earn their pay! 😉 Hear that “chugga-chugga-chugga”…it’s the roller-coaster heading back up the tracks! 😀
Thank you for your posts. I guess what really surprised me the most was that he guessed so accurately that I had had these two problems as a child, & that he seemed not at all surprised that I had gone on to develop CIDP. He said he wished he could tell me the names of the other CIDP patients, but of course he could not (confidentiality issues.) How much I would like the opportunity to contact them…