Had my follow up visit with Dr. Kildare. Now that he has taken the time to read my medical records, he seems to think I am not a well person. No duh! His exact words were "You are a very ill person" and my reply was "I realize that", and I don't think I said that in a pleasant tone of voice.
He hem hawed around about small fiber neuropathy and that the test I had done there over a month ago could only detect LARGE fiber neuropathy. Instead of saying I do not have a problem because the test was negative, as it was implied at my last visit, this time he said well, after close review of my records I do seem to have some sort of problem. Huh.
Although I have "a problem" he does not know what it is or what caused it, nor does he have a treatment plan, a pain management strategy, or suggestions on possible lifestyle modifications to help me cope. He then said, well - we are just a small town - we don't have the resources of larger hospitals like Washington University/Barnes Jewish in St. Louis. "Your case is very complicated, and I'd like you to go see a specialist at Washington University." Exactly what I told them a month ago - cut to the chase and refer me somewhere else. I don't think I looked pleased. After all this was probably a $450 visit to be told I need to see another specialist, wait more time, take more tests because everything I had told them was true and now I needed to have another set of eyes look at my case. Augh!!!
He then said I seemed angry. Hmmm. I told him he was correct, I was "pissed". He said this could be a sign of depression. I said "This isn't a sign of depression. I am PISSED." He then said depression comes in many forms, and anger was one of them. I told him, "I am just a very direct person and I am pissed off! That's how people behave where I grew up. I am tired of going to doctors and not getting any answers and going to more doctors." He then tried again with the depression ploy and anger being a trait of depression. I said "This is a personality trait that goes back 52 years. When I am angry for a reason I let you know why. This is NOT depression." Has he never met a type A personality in a woman before?? Get a clue!
He then wanted to talk about my health condition and my mood, which had deteriorated by that point. I said I preferred not to talk about the impact of my health issues on my daily life. I already knew his solution would have been to refer me to somebody else, and I was getting to the huffy point. I said I needed a plan to keep on working, or to make a decision NOT to keep on working, but nothing, nada, zilch, except send me to yet another doctor. Argh!!
So my "plan" at the moment is to see Dr. Kildare every 6 months for a checkup, for what purpose I do not know. He told me that there was no cure for what ails me (whatever it may be - he seemed to think he had a diagnosis hidden back to be confirmed by the Washington University doctor). Enough said. Not really interested in contributing to his retirement fund. Right now I am only jumping through these hoops in the hope I will actually get a "real" diagnosis. Dr. Kildare has already marked "diabetic radiculopathy" off my diagnosis list - didn't even know I had gotten that one! He said he would coordinate my treatment with the Washington University specialist.
The plan for the Washington University specialist is for me to get an appointment there (which is probably going to be another month or two) and hand carry the radiology CD's of all of my CT and MRI scans to the appointment. The doctor there is a specialist in neuromuscular diseases especially autoimmune neuromuscular diseases. I have not met him yet, but I am calling him Dr. House - since he is going to have all the answers. I suppose I could have autoimmune neuropathy, I have several different autoimmune problems. I suspect it will be more money thrown down the rabbit hole never to return.
I am not sure if I have the fortitude left to go on with this charade. I told Dr. Kildare that I was at the last tiny bit of pain tolerance I had left. The pain has been difficult enough that I have had to steel myself just to put clothes on my legs and pelvic area. The neurontin is helping the pain but Dr. Kildare says I won't be able to tolerate a higher dose. I'm pretty sure that must be true because that was the only treatment level comment I got out of him in an hour. My blood pressure was still very very elevated today. Maybe they believed me about the pain because of that?? It probably was because I was pissed, rather than the pain!
I'm complaining, but at least Dr. Kildare was not overtly obnoxious like the last time where he tried to sincerely convince me that since the nerve conduction test was negative every thing was just fine. I did have to cancel my March 2011 appointment and now I have a late June 2011 appointment. I'm not sure if I am going to bother keeping it. Maybe I'll be in a better mood tomorrow.
Neurontin Day 8 600 mg at bedtime.
No sleepiness - it is 2:23 AM and I am still wired. The Headache seems to be trying to make a comeback tonight. I think the neurontin is aggravating it. The hives are not happy either, but I don't want to take any benedryl since it is so late already. I am somewhat dizzy. Not sure if its the meds, the kidney stones, or the fact that I have not eaten solid food (except for a grapefruit and I don't know if that counts as a solid) in several days. The nausea is very bad.
I am off to Michigan in a couple of weeks, and praying that my legs will hold out for one more trip. I was hoping I would have some different treatment to try before I needed to go back up North. Big sigh.
I'm going to get my heating pad all warmed up and see if I can get myself off to sleepy land. Hoping you all have great days the rest of this week. I was wishing today that I had Spanky McFarland with me to go "Pow Right in the Kisser" and give Dr. Kildare the smackdown. One more remark about anger and depression and I was ready to give Dr. Kildare a depression on his skull with my cane! But I am a civilized being and although extremely "pissed" I did not act on my thoughts physically. Besides, I value BLING too much to inflict damage on it.
