A familiar story to everyone but with a frustrating twist related to AD research.
When my wife started having symptoms our primary care physician prescribed Namenda without making a formal diagnosis. (How can they do that?) Namenda didn’t help. I did my own research and guessed that perhaps Aricept might help. The MD happily prescribed it but still never did any real testing or neurology referral (beyond a head CT) to make any kind of a formal diagnosis. (HMO - why do expensive testing when a prescription will cure things?)
I did more research and found a California state sponsored program for AD that is connected with a major university (USC). They reviewed a copy of the CT scan and did the talk testing and gave us a MCI diagnosis. Not a good Dx to have, but at least I had something to explain the symptoms. Our PCP has still never wanted to get a neurologist involved but what the heck, Aricpt works and I can track her changes in symptoms as well as an MD. (as discussed on this board, we live with our family) This was 2.5 years ago.
The folks as USC were very happy to take my wife as a ‘patient’ UNTIL . . . . they found out that our insurance would not pay them. (They like Medicare and MediCal) We were politely told that they ‘could not see her on a regular basis’. Is a university only looking for paying patients?
But I do believe in the value of research. There will never be any ‘cure’ or better management for this monster unless the data and findings about the disease are part of a huge database somewhere that can be accessed for study.
I attend AD functions and caregiver events and USC is always there promoting their research ASKING for volunteers. Great, I think. Certainly they would love to track and follow a (now) 59 y/o and watch her degrade from MCI through AD and on to the end. . . . WRONG!
WE eventually were called in for an evaluation for entry into their ‘research group'. Since they had seen her before (2 years before) they had her records. They did talk testing again and told us they would contact us for additional follow up and testing. Wow, always happy to help science!
About 3 weeks after our visit I got a call. We were told they are not interested! Seems her Dx is still MCI and since “she has not degenerated into an AD diagnosis” they cannot use her (?) WHAT??? Her condition isn’t bad enough for them???
Uhhhhh. . . . They were the people who gave her the MCI Dx and I bet they could call her symptoms AD if they wanted to! They said that funding is tight and they cant include people who are “not that bad” in their research . . . . Sigh . . . . . I donno why but being told that she is “not bad enough” has really bothered me.
Based on flyers handed out at other AD events, I had also took her to the VA AD study program. (you don’t have to be a veteran) They are associated with UCLA. The VA study folks talked to her and said that the UCLA folks would be probably be interested and that they would make a referral. Well eight months now, no call.
So, I guess perhaps my wife is ‘cured’(?) . . . . I have seen downward changes in the last 2+ years . . . . but since the doctors cant see them, I guess it is just my imagination. . . .
I don’t get it. If there is going to be any kind of a “cure” for this disease it is NOT going to occur on the deathbed. Cancer has never been cured at the end stage. Diabetes is not cured after the symptoms have become severe! I would think that some major research database might be interested in tracking a young age, early stage person with symptoms, guess they are not. . . . . :-(
I can tell you that this experience is setting my opinions for participation in any other future research projects or clinical trials when her symptoms ARE clearly AD and dementia. . . . I donno why I am so angry about this but I am. . . . .
You have a right to be angry, and your story, unfortunately, is not unique. I have only been in DC for less than 24 hours, and the advocates are as angry as you. We are determined, not only to get the politicians to listen to us, but the DOCTORS! There is still so little awareness of AD/dementia as a disease that can strike in younger ages. Everyone I know who is younger than 70 has been misdiagnosed, ignored, shut out of trials, and the list goes on.
m-man....you're right about the HMO. I can tell you, that as the wife of a physician that was working for an HMO in Florida, they were encouraged NOT to refer out to specialists. (as a matter of fact, something that not everyone knows, his group gave BONUSES to the docs that made the least referals!!!) I'm sorry you're having this problem. Its difficult enough to deal with without having the medical community be in denial....as some of our family are. Sorry. Jen