I appologize for the length of this post in advance. It is going to take me a while to explain what I need help with.
My Dh has had problems since 2003. We had a dx in 2004 of MCI. He is now 60 years old. We had a dx of EOAD in 2005. He had a PET scan and the neurologist and radiologist said consistant with Alz. He has been on aricept for 5 years and namenda for 4 years and Effexor for 6 years. The first signs I noticed was memory problems. My DH has always been very argumentative if he was right. So we do not know if the chicken came or the egg first so to speak. We are thinking that the mood changes came from the trouble with memory and being frustrated. My DH has never been physically violent. He has not had muscle atrophy or walking problems (except now he walks behind me). He is physically fit. Our neurologist moved out of state so we had to find a new one. Yesterday, I took him to one at the hospital where he does research testing and has had all of his neurophsyc test in the past. He has been going here for 5 years now. This is a new doctor though. We go in and they do the little MMSE test and then we see the neurologist. He has copies of my DH's MRI's from 5 years ago and of his PET scan. He asks us what dx we have been given in the past. I told him EOAD. He proceeds to tell be that it is FTD. That the back of my DH's brain in the MRI showed shrikage. I said well FTD starts in the front of the brain. He said that is a misconception. Well, I was totally disturbed at this point. Don't ask me why both diagnosis have the same result and there is no cure for either one. I guess it just hit me like the first time we had a DX. We had a new MRI done and the doctor wants to do a lumbar puncture. I am not going to do that. He said that my Dh was to young to have EOAD. Well, what does the EOAD stand for Early Onset Alzheimer's. So I don't have the results from the MRI yet. I get home and research everything on FTD. I know everything about EOAD. I found a site that shows the difference in each. I truly believe that it is EOAD. I am going to call the doctor that did the original testing and the research doctor to get their opinion today. This new doctor said that my DH's MMSE scores would have been worse over the course of 5 years if it was EOAD. But this year in May his scores dropped 4 points. He has done worse in the executive functions than other areas. By DH cannot remember what he ate 5 minutes ago, has not remembered a special date in over 3 years. In the past year he has had trouble with finding words and keeping up with conversations. He cannot write emails and needs help with everything dealing with his IPAD and computer. This also really happened in the past year. I thought that the medicines he is on was to slow the progression of the EOAD and figured that is why he was level for so long and started going downhill over the past year. The aricept and namenda are no longer working I was told by his other neurologist before she moved. She said to keep giving them to him or he could get worse faster. I am upset and did not sleep last night and just really want some imput to what others think. I have a journal for the past 7 years and documented the things that have happened to him. I think I know my husband of 28 years better than anyone. I don't know why I am so upset but I am. It was like starting all over again. Plus FTD is suppose to be hereditary. Please any suggestions or comments are welcome.
Jackie, no one knows your husband better than you do. Sounds like the new doctor is NEW and has a few things to learn...head slap for him! No tests are going to change the course of your journey, dear one. We all take it one day at a time. And as many have said before me...if you've seen one person with Alzheimer's, you've seen one person with Alzheimer's. My Lloyd has been my shadow for a couple years now. It is because they feel more secure if they are with us. Oh, it gets a little annoying at times when you turn around and bump into them. Take a deep breath and realize that there are some things over which we have no control and move on. Please don't wear yourself out! My husband's MMSE would be a big fat zero. And as far as medical testing, I don't do it. I deal with pain and injuries and behaviors that impact me negatively...that's it. I avoid sedatives because he is already impaired and sedatives impair him further. Lloyd is now 62. Saw the first signs 8 years ago and probably longer if I dwelled on it. It is what it is and the end result is the same. {{{hugs}}} and hang in there!
Oh jackiem29, I have no experience to help you with this. However I believe that you DO know your DH & this new neurologist making the statement that he is too young for EOAD.........well that just shows his ignorance on that. I'm sure there will be others along to give you some words of wisdom. It seems like there are Neurologists out there who don't have a clue. You are rightly upset. You have been dealing with this a long time & you are tired. I understand. (((HUGS))).
First, take a deep breath. Do not panic. You have been dealing with your husband's dementia for years. A change in dx is probably not going to make a big difference to you. Though I am not sure this neurologist is right.
If the neurologist is wrong, the irony is apparent to caregivers dealing with FTD. It is usually very difficult to get a FTD dx, partly due to problems in identifying FTD and partly due to ignorance in the medical community about FTD (including neurologists). Getting the right dx can make a difference in terms of treatment and dealing with the symptoms. But our lives are so fragile that any rocking of the boat bothers us. I know people who have been very distressed when autopsy reports differ from the dx or when they are wrong. You emotional response is quite normal, IMHO.
Before I forget, an important FTD resource. FTD Support Forum. http://ftdsupportforum.com. Feel free to go and ask questions and get support even if it turns out not to be FTD.
I want to touch on your fear about FTD being hereditary. As far as we know a majority of case are not hereditary. There are some genes that have been identified with FTD but a majority of cases do not. We've looked at my wife's family history and we do not see ancestors with FTD. The only case of dementia we know of what her grandmother and that was later in life. Her sisters don't have it. In cases where I know it is hereditary report report clearly that a parent had it, a grandparent and siblings (in terms of ancestors, they probably weren't diagnosed but they fit the FTD profile). There is also phenotype FTD which is clearly not hereditary and is marked by a slow progression. So I think the chances of a given case of FTD being hereditary is about the same as that for AD. There are many important environmental factors, such as head injuries and exposure to heavy metals that are probably important but hard to gauge.
You have done so many things right. You have a journal going back years. You have been researching what you can, which is overwhelming.
The MMSE is not a good test for FTD, and I am not sure how good it is for dementia. My wife scored a 29 in January on the MMSE, an improvement over the previous year. Patients tend to "pull it together" at testing and when seeing doctors. Also, the MMSE doesn't do a good job of testing executive function, the ability to decide what to do. Someone with FTD may do well on memory tests, but if there was a test to decide what to remember, would do poorly.
There is a difference between the disease and the symptoms. People with AD can look like they have FTD because any malfunctioning of the brain will affect the frontolobes, even if there is no frontolobe damage. A number of FTD dxes have turned out to be AD on autopsy, but the AD damage happened to affect the frontolobe functions. So proper dx is difficult and really isn't possible without an autopsy, so we can't know for sure while the person is alive. Think of Parkinson's Disease (PD). PD refers to a specific mechanism in the brain not working, which results in a know set of problems. It is possible to have parkinsonian symptoms without having PD, the damage to this part of the brain is caused by a different mechanism. So talking about different dementias can get very confusing.
Scans are still relatively crude. You need a FTD expert to read brain scans to look for FTD damage. My wife has had PET scans, MRI, and CAT scans. This was a few years ago and none of them show anything remarkable or unusual. The most important tests for FTD are neuropsych tests which can take 4 to 8 hours to complete. I do not know if it is worth bothering your husband to take these tests, I am not sure what the point would be.
And your husband is not too young for EOAD. The first case of recorded AD was age 52.
So why might it be important to get the proper dx. AD drugs tend to have an opposite affect on people with FTD and should be avoided. I know of people with FTD who did well with AD drugs and autopsy showed that they really had AD. So it is worth trying different drugs to help with the symptoms and see what works. Do any of these drugs slow down AD or FTD? I don't think so, I believe they just help with the symptoms. Drugs do stop working after a time and taking a person off them might be best to avoid side effects and drug interactions. I'm not a doctor so I am not going to advice you.
Do you live close to one of the main FTD research centers (Johns Hopkins, UCSD Hospital, U of Penn)? You may be better off taking your husband to a place where there is a team of doctors familiar with FTD and doing research. But you are right in consulting with your husband's former doctors and get their opinions. They may not be familiar with FTD and thus would not have suggested it.
OK, I'm babbling at this point. I am sorry that you need us but glad that you found us.
I’m so sorry you’ve had to deal with this new upset. I don’t blame you for responding as you have. Take a deep breath and remember: you DO know your husband best, YOU are in charge – not the doctors, doctors are only human and can and DO make mistakes, you should always TRUST YOUR INSTINCTS and switch doctors if you do not trust what this one is saying. (Personally, the statement that your husband is too young for EOAD would be a big red flag to me. I would not return to that doctor.)
I also feel the MMSE is essentially worthless.
AS has been said, most important reason for differentiating between AD and FTD is that FTD patients can be made worse by AD drugs, so the diagnosis is important for treatment. But given that your husband has been on AD drugs for so long, if this were a factor I think it would have been obvious by now.
For what it’s worth, I was once wondering about FTD with my DH and here is the blog with my conclusions: http://downtherabbithole-mary.blogspot.com/2010/12/frontotemporal-dementia-ftd-vs.html
Don’t let this doctor’s “wisdom” override your own. You are doing the right thing calling the other doctors for their opinions. I sure hope they are able to help you sort through this. Hang in there!
jackiem29, I can only echo all the comments noted above. You have described my wife to a tee, diagnosed with EOAD at age 63 after I had been keeping logs for 3 years noting what I saw as AD symptoms and our neurologist and PCP saw as signs of stress/anaxiety/depression. When I was finally able to convince my wife to go for a 2nd opinion at an ADRC, the EOAD diagnosis was confirmed. My wife is now 66 and this July is the first time her MMSE dropped under 25, so that test is utterly worthless to measure executive functioning ... which is not surprising since it was never designed to screen for AD but has been misused for 30+ years!! My wife's memory is also totally shot ... seconds after an event she has no memory fo it. EVERYONE on Joan's site has more knowledge than 99% of doctors dealing with AD, so as others have wisely advised, you need to trust yourself! I'd also advise doing one more thing ... get another doctor, one more familiar with AD!!
Jackie, the pain in your post, defines why I've stopped with Neuro's and rely solely on our very capable PCP. it took several years for me to comprehend the fact is my DW has a fatal incurable illness and that all medical science has to offer is to treat her symptoms as they appear. Treatment modality, drug selection and dosage is far from an exact science, it's trial and error. Every patient reacts differently to different meds . at some stage some must be hospitalized to get their meds adjusted. You need an MD with extensive pharmacological experience as realted to the treatment of "dementia" type disease "
I found DW and I were totally depressed after each Neuro. or Psych. visit and the only change was the thickness of my wife's chart and a bill was sent to Medicare. She never benefited at all. It really doesn't matter what label they place on our loved ones. FTD, DEMENTIA, EOAD, or AD there are no successful treatments, no Awakening, type drugs There is no question that my DW presents all the symptoms of dementia and no number of opinions will alter that fact there is no cure and minimally effect treatment available. I don't chase rainbows, My only focus or approach is on her comfort and my maintaing my ability to endure
"There is no cure for FTD and in most cases its progression cannot be slowed. Although no medications have been proven effective specifically for FTD, many clinicians look to the medications and treatment approaches used in other, similar disorders to develop a therapeutic approach. For instance, some FTD patients benefit from selective serotonin reuptake inhibitors (SSRIs, used in treating depression) and/or acetylcholinesterase inhibitors (used in Alzheimer’s disease), which prolong the activity of neurotransitters in the brain. Clinicians may also employ antioxidants, such as vitamin E or coenzyme Q10, which are known to slow the progression of damage to brain cells in general. Other medications under consideration include agents that impact the phosphorylation (biochemistry) of tau. "
If I had a dime for each time I was told of H "he is too young" I would not have the bills I have today. PCP, general neurologist, specialist neurologist, two psychoneurologists, a testing neuropsychiatrist, a treating neuropsychiatrist; probably someone I have forgotten. CT scans, MRI (Tesla 3), PET, LP and in the end it really made no difference.
marty above said it better than I can.
I believe H had FTD but could he have had AD too, Parkinson's too, Progressive aphasia too? As he wished, his body was donated for full organ research. As I understand it, I will never have the results of a brain autopsy but they will let me know what contribution my husband's body made.
Thanks everyone. I do feel better today. I think I am so upset because all I wanted was to go to a neurologist because ours of the past 7 years had moved. We need paperwork filled out occasionally for LTD and SSD. I am going to check and see if the PC can fill these out yearly. I think that they all have to prove they know more. This is a doctor in research so I think he likes test that may help that.
M daughter told me that I was more upset because of the dumb comment that my DH was to young. I had heard that for the first 3 years of trying to find out what was wrong with him.
All of you have helped. Thank you. I am going to get his recent MRI. Just to see the changes. And then just go to PC for meds and check ups.
Thankfully no one has ever said my wife was too young. Doctors have expressed the tragedy of her being young, but never refused to accept her condition based on her age.
My excuse for us seeing the neuro, who is a FTD specialist, is that this is required by LTD insurance. It is a once a year trip, I like the neuro (as does L), I get some feedback and a summary of changes, and I can e-mail the neuro at any time with any question during the year. No scans or anything else that is inconvenient or will add stress.
I think that sometimes the most frustrating part of dealing with the disease is trying to pinpoint what it is exactly -- not to mention the professionals who really don't have a clue and well-meaning friends, family, etc. who think they are reassuring us by saying "He's not that bad". I think that sometimes my DH has AD, sometimes FTD -- he seems to fit the profile for both. In the end, all that really matters is giving them the best of ourselves without burning out and treating them with dignity. Hang in there -- trust your own instincts.
Names, names, names . . . . I dont think doctors understand that it might not mean much to them, but it can to us.
Yeah I know how sketchy a dementia Dx can be BUT . . . My wife and I walked out of our family conference after 3 days of testing at a MAJOR UNIVERSITY Neuropathology center and we we told that;
"She PROBABLY has AD, but we cant say for sure!"
WHAT are your saying?? My wife is 57 years old. Does she have it or not? I NEED TO PREPARE!!!!
"Well, we really cant Dx AD until the autopsy, before that anything is just a guess"
So I had a wife with strange behaviors who could not hold a job (our family income was cut in half) that MIGHT quality for disabilty, but without a Dx I really didnt know if she qualifies. I was still in a little denial and wondering if she was 'faking'.
And STILL they refused to say that she "Has AD" and refused to assist with the disabilty papers. Thanks a lot for NOTHING!!!
She is now 62 and since then I have only worked with PCP type docs and only on controling the behaviors. I have never repeated any tests or scans. Why bother? Your journal and personal experience is the best diagnosis in the world!
Jackie...you probably came here thinking we all had the right answers for you or could tell you where to go to find the right answers to your concern about your dh's dx. This has always been a major frustrating thing for all of us. But, as time goes on we learn to live with it like so many other things we never even knew we would have to learn to live with. Not knowing, is something that can drive one crazy, but like they say....you see one AD person and you have seen one AD person. It is different behaviors, etc. for each and everyone. As time goes on you will learn to live with no dx that you can put in concrete and you will learn that it really doesn't matter, because it is what it is and call it what you want it is and it still is "it"...whatever it is.
The one thing I can tell you I would have done differently with my dh. I would never have said he had AD. It seems to put a cloud on the face of many and no one seems to understand. I would have just told family and friends he had vascular dementia. Believe it or not, but that is what the hospice dr. put on his death certificate and that was the first time anyone had said that is what he had. I would just pick one of the dx you like the best and tell friends and family that is what he has.
Hope you continue to post here and we can help you in others ways. I could never have made it to the end with my dh if not for this site.