DH is in the open label BAP study. He has had his first infusion. He knows having and MRI is part of the study because he was in the double blind study for 18 months. He continually obsesses about having the MRI. Almost every day he starts telling me he wants out of the study because he doesn't like the MRI. When we actually go for the MRI he is fine. Why does he keep remembering about the MRI when he really recalls very little. He has problems naming things,he cannot choose his clothes or remember to bathe or brush his teeth. I am almost ready to give up on the study. It just makes me feel like we are giving up. I don't think the Razadyne is doing any good any more, he's been on it for about 7 years and Aricept before that. The last time he had the MRI, when we were on the way home, he asked me what did they do to me there today.
I wanted him to be in a study, but hb does not like going thru the MMSE or other similar test so we skipped doing it.
It is possible the Razadyne is not working as they are only proven to be good for 18 months (that is all the longer studies have gone). It may be time to consider stopping but talk to the doctor first. Is he on Namenda too?
I guess when he obsesses about the MRI this is time to turn deaf ear or 'in one ear out the other'.
That MRI really impresses them. My husband apparently dreamed about it last night and this morning he was saying he did NOT want to go in that big tube again. It's been over two years since he had a couple.
I have a good MRI story to add to this discussion. In my other discussion, I talked about what a hard time I had getting DH to get his MRIs and do his doctoring this time. He has to have an MRI of his brain every two years to monitor the growth of his petituary gland tumor. This year, the doctor ordered two MRIs of the brain to check for other problems. No other problems were found.
Anyway, we had the lab work, MRIs and doctor appointment all scheduled. The lab went fine. However, he hates MRIs and it was quite a long two weeks between when they were scheduled and the appointment time. We show up at the ratiologist to check in. First, the receptionist handed DH paper work and on top was a paper that he is suppose to sign saying that if the insurance doesn't pay then he is responsible. We all know that this is customary but he started to obsess about how he will come up with $10,000 for the MRIs. He just pulled this $10,000 number out of the air. Then they tell us that our insurance company won't pay for both brain scans if they are done on the same day. And that he has to come back the next day for the second one. By this time, DH is shaky and still trying to fill out all of these forms.
I sat him down and went to the desk privately and asked her if she had any knowledge as to the purpose of these scans for DH. She opened his file and see Pet tumor and memory problems. I told her that they really should have a plan in place for handling patients who might be volitial. She was very sorry and told me that I could call Blue Cross/Blue Shield to verify this information.
I call BC/BS from the waiting room and was told the same thing by a Rep. I then asked DH if he would consider coming back the next day for the second scan. He kept telling me that he didn't know. He was really shaken. I asked the receptionist again if there was anyway around this as he almost didn't agree to come at all and we really needed this scan. About that time, he walked out the door. She asked me how long until he would be back and I told her probably never. I found him in the parking lot crying. he was scared and felt like a fule. He wanted to talk to his doctor. I called the office and the doctor was out that day. I drove to the office and went in and talked to the nurse who knew how bad DH did not want these tests. She and the doctor called BC/BS the next day and were told the same thing.
I called my companies "on-call" nurse who, in turn, called my company's insurance representative. they found that my call to the insurance company was not documented, however, the doctor's call was documented. The insurance rule had been mis-represented by both the radiologest and the insurance rep that talked to the doctor and me. The rule stated that unless the doctor had a medical reason for both exams that they could not be done on the same day. As DHs doctor did have a medical reason for (tumor and memory problems) that the insurance company would pay for them both on the same day.
It took me a week to get DH to agree to the MRIs again and we finally had them done at a different provider.
DH is scared of the tightness of the tube and doesn't like the noise. He is also scared of the die that they inject because he has seen stories on TV about how harmful it is. He is also scared of radition from the scan again from TV even though his nurse told us that MRIs use radio waves and not Xray.
I spent a lot of time educating both the radiology office and the outside group who handles insurance claims for them about how they need to be more proactive especially with these kinds of patients. I told them that it was totally unacceptable to wait until the patient is standing in front of them to talk to them about these kinds of things. The outside Ins. group did admit that they knew the rule but that it was easier for them to just tell patients that they will not do both exams on the same day. The ratiologist office was just following their instructions.