Robert had a repeat of the neuropsychological testing a week or so ago. His tests results were really good - much better than they were pre-exelon and namenda. In fact, he pretty much tested as an average person would. So, his doctor says, "You've got something, but it isn't alzheimer's." I asked him how he explained that it was the alzheimer meds that made the difference and he said that he didn't think that they did. He thinks it was a delayed reaction to all of those ECTs he had 4 or 5 months before starting the meds. Is that even possible?
It also doesn't explain why his PET scan from 2006 showed decreased metabolism in the parietal lobes. He said that severe depression can cause an abnormal PET scan. Would it look just like early AD?
I'm really confused. He's suggesting that Robert "try" working. I would love for Robert to work if I knew it wouldn't start this whole mess all over again. We are going to try and get in with the neurologist who also confirmed AD last year.
Consequently, the doctor does not want to take Robert off of the exelon and namenda.
Robert does nothing all day. He just sits out on the deck and read newspapers and smokes. Or he lays up in the bed and reads newspapers. This new idea that nothing is wrong with Robert is really makig me wonder. Has he just turned into a bum?
What are ECT's? That's my first question. I am not a doctor or scientist, so I can't answer any of the technical questions. What I can say is "You've got something, but it isn't alzheimer's." would send me screaming in frustration, and you have a perfect right to be confused. I definitely think you are on the right track to go back to the original neurologist - bring the new reports and ask (demand?) to know what the diagnosis is. You can't treat or cope with the unknown.
It is very common for young patients like Robert (early 40's, I think you have said) to be continually misdiagnosed. Are you going to a specialized Memory Disorders Clinic?
Leighanne, wow - talk about an on again, off again thing. His behavior from what you write does not sound normal - going back to the one who diagnosed him originally may be good - would a third opinion be better?
As noted in several posts and on Joan's blog. The early stages make it very difficult to diagnose AD. Doctors often use elimination of all other possibilities to decide that it is AD.
Is there a memory center you could get to that might be more comprehensive and give you a better diagnosis?
The first 2 Neuro's I took my husband to wouldn't commit to a diagnosit. It was 3 years before they decided on Parkenism with dementia and AD One of them was at Cleveland Clinic and he told us he DIDN't have AD but he didn't know what was causing his problems. He did NOT recomment Aricept because he said it wouldn't do any good. However, our GP said what could it hurt and we did start him on it.
I was in denial and thought a diagnosis that he did not have AD sounded pretty good to me. Later after going to WVU the Neuro did the diagnosit. I think part of the dia. delay was because he had so many minor overlaping symptoms it was confusing until things progressed farther along.
Leighanne, my husband will be 55 in two weeks. He has never been checked for AD. I'm almost sure it is FTD. I have noticed weird things for 6 to 8 years. The last 2 to 3 have been pretty bad related to mood swings, agitation, and anger. The old "flipping out" for nothing at all. I was at my wits end, when I found this site through an Internet search of his symptoms. I have been dealing with some very short term memory problems. Not remembering when I tell him something and then questioning me later and getting anger about me not telling him. Problems with counting money and understanding financial concepts. Asking a question three or four times like he doesn't remember having asked it allready.
Anyway, he has been doctoring for a pituitary gland prolactin tumor for about 9 years, so there are obviously hormone things going on. The tumor is non-cancerous and growing very slowly. So...I keep asking the doctor what is causing all of the other things like being tired all the time, moodiness, glassy eyes, sore joints, many more items. They rule out thyroid every 6 month, fibromilaga has been ruled out twice, no arthritis, may be a rheumatoid type arthritis but non-conclusive, Lyme diseases has been ruled out twice. So, the last time he was at the doctor, the doctor told him that his blood work was all great and the medicine was keeping the prolactin level where it should be, so he was doing great. I asked the doctor what about the bad heartburn, the sore joints, the glassy eyes, and why he was so tired all the time. The doctor looked me square in the eye and said "lets not look for trouble if there isn't any." Yes, it's very frustrating.
Joan, I believe ECT is electro-convulsive therappy used to treat depression but I could be wrong. Those are certainly the initials used years ago when I worked in a psychiatric hospital. Leighanne, I agree, I would certainly go back to the first neurologist. Doing nothing all day sounds like depression to me. I hope you get some answers.
Yes, sorry, ECT is electroconvulsive therapy or shock therapy. When everything surfaced in 2006, we were told that he was just severely depressed and was resistant to medication. So, he underwent approx 15 ECTs at the end of 06. Things seemed to get better. So, he tried to go back to work in Feb. He lasted 1 week and everything was back worse than before. So, in March the ECTs started again. I think he had somewhere around 20 that time with no real improvement.
Then in Aug 07, he was started on Exelon. Namenda was added in Sept. By December, he had improved tremedously. So, who knows????
I'll let you know if we get in to see the neurologist.
I can sure relate to your confusion. My husband has had memory problems for the last 5 years, getting worse every year. After 5 MRI, EEG's, Lumbar Puncture, PET Scan & numerous blood test we were told his memory loss was due to the Absence Seizures. He could develop Alzheimer's, however, at that time, the results wasn't consistent with Alzheimer's. I just couldn't believe after all the research regarding Seizures I had done that they could be causing this much memory loss. He is between a 4-5 on the Alzheimer's scale. Last Neurologist visit I insisted he have another PET Scan, he was diagnoses with Frontal Temporal Dementia. I would also go back to the first Neurologist with the information.
Leighanne, I said I thought Robert sounds depressed again but I hope you don't go for another round of ECT's. I would be inclined to get the opinion of another psychiatrist, in addition to going back to the original neurologist. I feel for you. It's just so hard to know what to do for the best and it always takes so long and so much energy to deal with the medical system. Good luck.
The patient Dr. Alzheimer reported in 1906 died at age 56. When I was in medical school Alzheimer's disease was "pre-senile dementia", that is the patient was younger than 65. Anyone over age 65 just had senile dementia. In 1977 it was shown that the two diseases were the same. Doctors who graduated from medical school after 1977 think of Alzheimer's disease as a disease of the elderly since that's were most of the patients are. They forget that the original case was a young woman, so they do not recognize the disease in younger patients. They need to be educated.
I think it is very important to realize there are variants of AD, there is a frontal lobe variant that is pimarily a sense of apathy. It is not necessarily feelings of hopelessness as in depression but just can't seem to get up and do anything. Early on the memory issue isn't there or is very mild. although it eventially happens. Also keep in mind that the higher their IQ the longer it takes for the testing to show abnormalities. They may drop but will still be in the "normal range" but not necessarily normal for them. Also remember in the early stages "depression" is common and can affect testing, if treated, test results will improve temporarily. Eventually it will fall again. Pet scans can show abnormalities from depression but depression is a symptom of early alzheimer. So To make a long story short, go back to the neurologist (if he is reputable and associated with a clinic that specializes in dementia and take the results and all your questions. Let them know ahead of time you have lots of questions and want enough time to have them all answered. You description has not convinced me he does not have alzheimers.
Sometimes I wish we hadn't had so many test. I know the doctor's were trying to find a cause for my husband's problems, however, each time the test come back & really didn't show anything, it gave me false hope that he didn't have Alzheimer's or anything related. I would leave the Neurologist office thinking everything was going to be fine with the right medication. I felt like a yoyo, one day I would think we are going to work this mess out & then the next know things were never going to be normal again.
The problem is that there is no test for Alzheimer's at this time. There are a couple of things that might become tests that are being worked on in various places, but on real test that is accepted and that the doctor can just order and then they know.
What happens instead is that they work through their checklist. It isn't thyroid. It isn't A. It isn't B. It isn't C. It isn't FTD or Vascular Dementia and it isn't Parkinsons. And the only thing left is Alzheimer's that fit the symptoms. And the Alzehimer's drugs are working, kind of. So that is what it is.
And even if it is Vascular Dementia and/or Parkinsons, it could be Alzheimer's too.
Those names, like Senile Dementia have such a bad taste. They just use Alz as a catch all sometimes. But you say he has memory issues and evidently couldn't work when he went back. why couldn't he. Was it that the stress of trying to keep up the facade was too much. My DH is great in a social setting, but he gets tired. I notice in the beginning of a mental test he does not bad, but toward the end, he starts to tire, and can't answer anything. Of course, even in the beginning he has no idea where we live, town or county, nor our phone number. That's not important. he was never good at those things (LOL) But that tiredness in a short time does indicate to me that he's trying to hold up that facade (at least for my LO), and can't anymore.
My husband's tests go a lot like chris' husband's tests. Not so bad in the beginning. Really bad as he gets more and more tired. Doesn't know his address, phone number or the day of the week and didn't over a year ago when he was diagnosed. Not important. He doesn't care to know those unimportant things. <grin>
The old Senile Dementia was an attempt to separate what we now call Alzheimer's from early onset, which was also called something else 30 years ago. I admit that what we are now calling Alzheimer's is a catch all because of the lack of a usable test.
My husband responded extremely well to namenda, improved so much that when he saw the neuro again three months later, she became worried that she'd misdiagnosed him. She insisted that namenda could not possibly cause an improvement.
She's wrong. It can, and it does in some patients. So can the cholinesterase inhibitors, in some patients. So if the doctor is changing the diagnosis solely on the grounds that the meds helped your husband, the doctor is not very knowledgeable.
We no longer see the neuro who originally diagnosed my husband ... what she knows about AD wouldn't fill a thimble. We went to an AD Research Center for a second opinion. After extensive testing, they agreed it's AD.
It's a very good idea to keep your husband on the meds, talk with the neuro who diagnosed him, and if you're still not comfortable that you know what you're dealing with, look for a doctor who has expertise in dementias.
Just as a second opinion, the Rasidyne didn't do much by itself. Combined with Namenda there was a visible improvement. When he missed a single night time pill (he takes it twice a day) early on, you could tell he had missed it. Because of drug half life, that no longer happens. We don't miss pills often because that means I missed mine too, but it did happen last night and so far no changes.
There are others here who also experienced improvement with the drugs and not just the slow down. By the way, even with all of the losses in the last year, I'm pretty sure it would be worse without the drugs. I think he got slowed down.
Hi. I just want to say that Razydyne and Namenda have helped Chuck alot (Aricept was ineffective for him.) We know they help because 1) Chuck improved once he started taking them 2)we can look at the symptoms of the previous generation and can see that these drugs are alleviating the symptoms of this generation of his family. (In case, some of you might not have seen my earlier posts, the AD mutation PSN2 has been identified in Chuck's family. This is very rare.) Thankfully, they seem to be improving the quality of life and lengthing the early stage phase. But the life expectancy appears to be remaining the same.
Once Chuck knew he had the gene, his brother's neurologist recommended he and any other family member start taking AD drugs immediately. It was recommended they start before they even thought they had symptoms. This is because the disease is already present before identifiable symptoms manifest.
I would think if a person did not have a related brain problem like AD, these drugs would not improve a person's cognitive state. However, I don't know.
Chuck is involved in a PET scan study in Pittsburgh and we will be returning in Sept to see what his progression has been over the last two years. I would be glad to bring a list a questions to the AD group. Let me know. I could start another thread if anyone is interested.