An Update…

I have been blessed to have so many on this website support me throughout this process, even though I have not been diagnosed with CIDP, that I wanted to post an update. It will be a combination of a “vent”, include a little “rant”, and hopefully offer some insight to others who are still seeking a diagnosis. It will probably be long, as I tend to be “wordy”…so feel free to click the “X” box anytime, if you lose interest.
One year ago, after about 5 years of complaining of arm weakness and nerve pain down both arms, I had my “second” EMG. (My first was right before my surgery to repair a cervical disc that was herniated) During this EMG, it was found that I had decreased velocities in both arms, prolonged f-waves, some Carpal Tunnel in my right arm, and showed evidence of early demyelination. Rather than being “freaked out”, I was ECSTATIC! Finally…FINALLY…I had some “proof” that something was NOT right with me, and that this wasn’t all “in my head”. About two months later, I had another EMG, this time on my legs, which showed some problems with the nerve conduction in my legs, but showed only sensory loss, not motor. My arm EMG’s had shown mostly sensory, but “some” motor loss, as well.
I was referred to a local neurologist, an MS specialist, who basically wouldn’t even take the case; threw his arms in the air and said that whatever I had it wasn’t in his specialty, and he referred me to the local expert at the University of Utah. This physician wasn’t in my insurance “network”, so I saw one that was. My second neurologist was, in my humble opinion, a money-seeking quack/hack. My first clue to this was when I walked in his office and there was a big sign…CASH ONLY! NO CREDIT/DEBIT CARDS…NO CHECKS ACCEPTED!”. What kind of doctor’s office won’t even take debit cards?!?! Anyway, this neurologist suggested that my problem was either sleep deprivation (he also ran a sleep clinic and wanted me to schedule a very expensive “cash-only” sleep study) or a result of being “borderline obese, and thus, the result of some sort of pre-diabetes condition”. I’d already had a sleep study done a couple years ago, and it found no evidence of apnea; I had a “Glucose Tolerance Test” after this visit and passed “with flying colors”. I’d also add that I am 6’2″, 225 pounds, and a 38 waist…so, I have a little bit of a gut, but I’m not what I would consider “borderline obese”. I’d also been in the best shape in years, as my wife and I had been making major changes to our lifestyles…working out 3-4 times per week, eating more naturally, etc. I had just lost about 30 pounds, so him saying that kind of “stuck a nerve”…pun intended.
After this, I sought a different neurologist; the one I found was a lady that taught at the U of U, was trained in their techniques, and seemed reasonably adequate to give a diagnosis. She performed her own EMG’s (limited tests on one arm and one leg) and found that she disagreed with the original test results somewhat. My interpretation was that there was a bottom line for “normal” results…the first neurologist found me just outside that line, while this doctor found me just “inside” that line. She, too, referred me to the University of Utah neurology department, proclaiming that they were the “experts” in this type of illness.
I saw that neurologist, finally, about two months ago. He took one look at me, did an EMG, and proclaimed that he could find NOTHING wrong, all EMG results were perfectly normal, and even said that I didn’t even have a “Peripheral Neuropathy”, let alone CIDP or one of it’s variants. During this visit, he asked me to “start at the beginning”, which I did. BIG MISTAKE! The result was that he focused solely on a very minor complaint, from almost ten years ago, and I never felt like we got around to the major complaints I’ve had over the past year. He stated in his report that he felt there was nothing to suggest “small-fiber neuropathy”, but admitted that the only conclusive way to tell would be a skin biopsy. He said he could do one, or he felt that the referring neurologist could do it; she doesn’t feel adequate to do it. Again, he’s not in my “network”, so if I have him do it, I will have to pay a LOT of money out of pocket (and my pockets are pretty much limited to lint lately…)
Last month I spoke to a friend, who’s daughter had gone through many of the same things I have been. She saw a neurologist who she felt was great, and was willing to do whatever it took to find a cause. She ended up having a PFO, or hole in her heart, which was fairly easily remedied. My visit with him was less stellar…he looked at my records, did the requisite “strength test” that all neurologists do, and said that whatever I have is not neurological, but probably musculo-skeletal in nature. One interesting test he had me do, which I hadn’t been asked for before, was to walk heel-to-toe with my eyes closed. I couldn’t go one step without falling over! Then, he proceeded to discount the results of that test. My thought was “if it isn’t going to count for anything, why the HELL have me do it?”
So, I’ve seen 5 neurologists in one year, and each subsequent visit leaves me more frustrated. Each new neurologist seems to lessen my diagnosis, rather than confirm anything. I explain to each that I’m not there because I dispute the diagnoses of other doctors, but rather that I don’t feel I’ve gotten any diagnoses to dispute. None could even agree on what I DIDN’T have, let alone what I DO have….
I feel I have gained a “reputation”…they look at my records, look at the number of doctors I’ve seen, and quietly, in their own minds, decide that I’m a hypochondriac or problem patient, and make their minds up before they ever start the exam. I don’t “look” sickly…I don’t use crutches, wheelchair, or walker…although I do have an unusual gait because of the pain and stiffness.
Several months ago, a few here suggested that I e-mail a couple of doctors for help. I, personally, have found no benefit to this approach, at all. I e-mailed the “wunderkind” at the U of U, asking for his advice; his responses all suggested he was quite put out by a patient actually e-mailing him directly and said that he thought I was being “well-served” by my current doctors. Of course, when his associate saw me, all he could do was bad-mouth the testing procedures of those other doctors, but then in the same breath would say that I should listen to them. ??? I also tried e-mailing Dr. Lewis, and basically got the same response; trust your doctors, and if you don’t, find new doctors.
I was referred to a Rheumatologist, and saw her last week. She conclusively diagnosed me with Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain Syndrome, which are all commonly referred to as “over-lapping” illnesses. She has suggested I start taking Savella, Amitriptyline, do water-aerobics, strength conditioning, PT, etc., and learn to live with these illnesses. I have started the Savella, and will start the Amitriptyline later this week.
When I asked her about other symptoms that are not typical of those three illnesses…decreased temperature sensitivity in my legs, loss of reflexes in my elbows, wrists, and ankles, and others…she said that “No”, those symptoms were not caused by any of those three, but she could offer no suggestions.