It appears, after reading many of the posts here, that alot of people have been able to get a Dr. to diagnose ALZ. That has not been the case for us. Approx. 2 1/2 years ago, I began to notice changes in my husband, then aged 52. We have since been through every test mentioned and then some. He was prescribed Aricept, which we both think has helped with the severity of the mood swings, but the Drs. still will not diagnose him. The last thing they told us was that they don't know what is wrong. Our frustration lever, at this point, is through the roof! My husband is having an increasingly hard time going to work, but without a Dr. diagnosing him, is unable to even apply for disability. I was forced to give up my job 3 months ago, due to my husbands' excessive need to be in contact with me at all times. He calls me 10+ times a day, and if he is unable to immediately get me on the phone, he freaks out! I have had him pull me out of important meetings just to see what I'm doing, or to tell me about his day. It is just crazy! But I still can't get a Dr. to committ to anything!
Sorry about all the rambling! I guess that my frustration just took over....Anyway, how do any of you get an actual diagnosis? We have been to many Drs. and always end up in limbo. ANY help would be greatly appreciated at this point.

ashware -- this is frustrating -- it does take a long time for a diagnosis. I took me nine months. If the doctor put your husband on Aricept the doctor must think it is a dementia like Alzheimer's since this is one of the primary drugs. I assume you have spoken with the doctor and told him/her that you need a diagnosis in order to apply for disability/help. Is your doctor a neurologist? I would assume so, but if not, it would help to see one. Or to see another neurologist in your area. Perhaps if you told them your insurance company needs a definite diagnosis that would help. I know that my insurance company has to have a doctor's letter stating my illness before they will authorize payment for my Exelon. I started on Aricept and they needed it for that as well.

Best of luck to you. I know it is hard. And, I used to do the same thing to my husband, call him all the time or needed to know that I could get in touch with him. It was a comfort thing I guess. My medication has tamed that symptom somewhat but if we are in large groups of people I find I have to be touching my husband or he has to be in my eyesight!

Kris B. Athens, GA
www.creatingmemories.blogspot.com

Ashware, you do not have to have your doctor's diagnoisis to apply of SS diability, if this is what you are wanting to do. You can apply and request he be sent to the SS chosen disability doctor for a diagnosis. This is how I handled it when my husband first applied. My reason was a little different. We had moved and did not have an established doctor in the state, but the results would be the same. They will always do this.

Dear Kris,

Thank-you so much for your reply. I am so sorry about your illness!!! I pray that you have a loving support system to be with you.
In response, yes, we have been seen by 2 different neurologists. The first one made it seem like the things that we were experiencing were a figment of my imagination, because my husband denied them all. By the time we were seen by the second Dr. I had convinced my husband that the only way we were ever going to get any help, was for him not to deny everything. In response, that Dr. told us that it probably wasn't ALZ. because my husband was aware of it! Talk about a "catch-twenty-two".
Anyway, 2 1/2 years later, we are right where we started! Frustrated, with no answers. All I know is that my husband has so amny symptoms that fit nothing but ALZ> Plus, he has a strong family history of ALZ,

Ashware, my name is Tracy and I was diagnosed in 2002 at 38 years old. It took 2 years, alot of tests, many doctors and a trip to the Mayo Clinic to get an early diagnosis of Mild Cognitive Impairment to the best of their judgement at that time. Within 6 months after that trip I was diagnosed in writing from my Neurologist with EOAD. I say in writing becasue my Neurologist is very much an optimist and telling a young family with a child at home is the last kind of news that they want to deliver. Though he did put me on Exelon and Namenda when it was approved here in the U.S. so for 2 years all he ever did was talked about the diagnosis though he never verbalized until recently and he still tries to give me the greatest sense of hope in find a better treatment or a cure. We now actually talk about the diagnosis during routine visits as I am progressing and he knows that at the current moment I understand what is happening to my brain and that i am losing many functions specifically comprehension and perception as well as decision making skills.
So, I echo the words that kris has said to you as it unfortunately depends on the education about the disease that the doctor has in diagnosing and treating especially EO. Eventually they will give you a diagnosis once all of the testing has been completed and are comfortable with the effects of the medication.
I am sorry that you have to go through this, but I hope this lets you know that you are not alone, though I am sure that doesn't make you feel any better. You just have to take it one moment at a time.

Ashware,

Like Tracy, I went through about a year of intensive testing and referrals before I was diagnosed with EOAD. I started with my primary care physician, was referred to the University of MN, and they referred me to the Mayo Clinic. Along the way I received neurological exams, blood tests, urine tests, spinal taps, neuropsychological exams, MRI's, balance testing, physical therapy evaluations, and PET scans.

Finally, in late December of last year, my neuropsychologist at the Mayo Clinic met with my wife and I and delivered the diagnosis of EOAD. I am 46 years old.

If you can get a referral to an institution that has specialists that deal with Alzheimer's (such as the Mayo Clinic), you may have better luck. Given that EOAD is more rare, most doctors see relatively few cases. When I questioned him about my diagnosis, My doctor at Mayo explained how he had come to that conclusion, and then told me he was confident in the diagnosis because as a specialist in this area, he is referred far more cases than most other doctors will ever see.

Your husband's symptoms sound very much like how mine began, only I began to notice it before my employer so I was able to be more proactive. My suggestion would be to get really assertive about being referred to somewhere like the Mayo Clinic, because for many people their disability insurance is tied to their employment. Thus, you would not want him to lose his employment before he is diagnosed and placed on disability.

Also, you need to know that when you receive the diagnosis, the disability paperwork begins. Mine took over 9 months (between the long-term disability and Social Security). I just began receiving Social Security about a month ago, and started the paperwork back in February.

I wish you the very best of luck, and please know that we are all here for you. Hang in there...

Take care,

James

Ashware:

My husband's diagnosis took 3 1/2 years, and it was very frustrating!His primary care doctor is an internist...he ruled out all the other possibilities through blood work and those kind of screenings. Next came the neurologist who had an MRI done and his diagnosis was that there was nothing wrong. We both knew that it wasn't true (wished it were, of course).But since that was the answer from the specialist my husband was sent to, his primary care doctor seemed to think that settled things. At every subsequent visit I would say nothing was better and perhaps worse. He prescribed anti-depressant for my husband.For the next three years nothing changed as far as the doctor was concerned. I finally called the Alzheimer's Assoc and asked where locally was the best place to go for diagnosis of EOAD.(I should have done that WAY sooner!) They suggested the University of Washington memory center, plus a whole battery of tests done by a neuropsych person that pinpoints areas of memory loss (an 8 hour day of testing).It confirmed what we pretty much new,but at least it felt like we finally had credibility. The diagnosis also allowed us to become involved with the research center doing drug testing for Alzheimer's.Strangely, his primary doctor seemed reluctant to accept the diagnosis even by the best in the field locally.My husband is now 60; diagnosed about 1 1/2 years ago.I think getting the diagnosis was important...the reality got us moving on doing the legal paperwork (POA,etc) and in some strange way was a relief to Know we were not imagining things.

All the best in getting some answers...

Marge F

Marge,

How did you get your husban into the Elan study and is there going to be further trials. I hope your husband is doing as well as can be expected

Kind Regards

Denis

Denis:

Getting into the research study was a fairly long process of evaluating all the testing done to that point, plus general health. There are Alzheimer's research centers at many locations around the country...I think you could probably find out via a web search if there is one near you. We are now tied in to the University of Washington Alzheimer's research center and I know they are involved with several different studies with different drug companies,plus they (and now we) are part of a national registry of EOAD. We had to agree to have my husband's brain donated for research after death. The Elan study is being conducted in three phases, with participants from around the country. I think there are 7 people participating from our site.We were just told last week that after the final infusion scheduled for March, all participants will be given the opportunity to have the "real" drug, as half have received a placebo. There seems to be some real excitement regarding the results to date. The commitment to being involved is pretty intensive, especially initially. We have probably had 30 appointments over the past year, and if I remember correctly, at least 4 MRI's thus far.
If you have any other specific questions, I'd be happy to try and answer.

Marge F

Marge, Thanks for the detailed reply. Alzheimers patients need hope and please God an effective therapy will be found sooner rather than later. I had heard good things about the Elan study. My Mother died from Alzheimers disease at the age of only 68 - never drank or smoked. It was terrible what my mother and the family had to go through.It was extremely difficult to get a diagnosis initially and well you know the story. I now have a very close friend who has been confirmed as having Alzheimers even though he is not yet 55. He is willing to try anything and I understand that the current meds are only of limited use. We have contacted a number of sites conducting trials but no luck so far. The Elan study is all booked up.I would love to get him into the next phase of the Elan study but there is no news of when it might start. I just want to give him all the support and help I can and see if this awful process can be stopped in its tracks.

Marge,

I forgot to ask you how is your husband doing. Iknow he might not be getting the real thing but did you see any improvements. Also has anybody said when would this drug be available to all Alzheimers patients. Does it offer hope.
Again thanks for your help.

Denis

Denis:

Unfortunately, I think my husband has had the placebo (actually, I am hoping that is the case because I have not seen improvement and I want this to be an answer!) From what I was told last week, they have seen some promising results and everyone in the study will be given the opportunity to have the drug when they complete the 6 infusion test.For my husband, that will be the end of March. There had been talk of having a 4th study group; but I think they (Elan) is changing as the results are analyzed. There were 180 people nationwide in the current study...divided in 3 groups receiving different doses. I was told the next step would be a much larger test group; perhaps 2,000 or so people.There is strict protocol on how all this is done, and we signed tons of paperwork.I never figured out what the exact criteria for selection was, and I assume they wanted different ages and other factors.If your friend has been in contact with a research center, they will certainly know if and when Elan expands the test to the next level. As I said before, there are a number of other studies being conducted as well, by other drug companies. I would certainly go through all the preliminary testing, paperwork, and interviews and be on a list of potential participants so that when a study is getting ready to be launched, all that is in place. We are all hoping for that breakthrough, and I truly believe they are getting close! One of the doctors we work with has been in this research for 25 years and thinks they are really on the right track...the drug companies are in a race to be first. Best of luck to your friend!

Marge

Dear Marge

So Sorry to hear about your husband. I do hope things improve for him and will keep you and him in my prayers. Thanks so much for all the info - its just great to hear some positive news so that there might be a chink of light at the end of the tunnel. I will tell my friend this information and will definitely keep looking for something. I know the risk in trials and also the possibility of getting Placebo but at least you are being proactive and willing to try something and not just give up. Your dedication will be rewarded some day.

Thanks again

Denis

Hi Denise:
After blood tests and MMSE, my family dr. diagnosed alzheimers, and referred me to a Memory Clinic. Five months later and more blood tests and cognitive testing, the diagnosis of AD was confirmed. I really wasn't convinced I had AD, because I didn't have the memory loss usually associated with it. Since in Canada it takes forever to get an appointment with a neurologist, I signed up to be in a neuro imaging research study in Toronto. I figured this would get me in quickly to see a neurologist...and sure enough, I couldn't participate in the neuro imaging research study because I don't have alzheimers! I have frontotemporal dementia in which the memory loss gets worse later, but the disconnects, disorientation and abnormal depression and discontent are rarely as great as in alzheimers. The neurologist has now ordered MRI, PET, EEG and more cognitive testing.
So it really paid off for me to try to get into the research study.
Even with FTD, I can still continue taking the aricept and namenda....thank goodness...because with those medications I can almost function normally! Good luck to your friend!
Hugs
Mary~Canada

Mary, I think you have to be proactive and try to beat this thing or at least control it. Getting into one of the trials is I believe the best way to proceed given the limited use of existing therapies. I have heard good things of the Elan study that Marge's husband is in. But the trial is all booked up at the moment. I am going to see if there is another larger Phase (would only happen if first trial results looked good). Therefore I am anxiously waiting for news on that trial and Elans drug.

2-1/2 yrs, 3 yrs, 3-1/2 yrs ... my husband's first signs of a problem were vision problems - perception & spatial relationships - in 1996 at age 54. Many doctors, many tests and many hospitals later ( and 10 yrs!) the latest neuro has given us a diagnosis of PCA - Posterior Cortical Atrophy. Still no answers!

Has anyone had any experience with "Alzheimer's Alert" a urine or blood test offered by Nymox Pharmaceuticals? My wife has been diagnosed with MCI and we were interested in learning more about this new test. Thank you.

quote:

Originally posted by Marge F:
Denis:

Getting into the research study was a fairly long process of evaluating all the testing done to that point, plus general health. There are Alzheimer's research centers at many locations around the country...I think you could probably find out via a web search if there is one near you. We are now tied in to the University of Washington Alzheimer's research center and I know they are involved with several different studies with different drug companies,plus they (and now we) are part of a national registry of EOAD. We had to agree to have my husband's brain donated for research after death. The Elan study is being conducted in three phases, with participants from around the country. I think there are 7 people participating from our site.We were just told last week that after the final infusion scheduled for March, all participants will be given the opportunity to have the "real" drug, as half have received a placebo. There seems to be some real excitement regarding the results to date. The commitment to being involved is pretty intensive, especially initially. We have probably had 30 appointments over the past year, and if I remember correctly, at least 4 MRI's thus far.
If you have any other specific questions, I'd be happy to try and answer.

Marge F

Hello Marge F, I have followed with interest your husband's involvement in the Alzheimers Clinical Trial. I would appreciate if you could provide an update on his wellbeing and whether the trial has changed to an Open Label where all the participants will recieve the drug. You indicated that this would take place in March. I would appreciate an update. I noticed the concern you expressed at allowing your husband be a participant in a Clinical Trial. If we are to make any progress in new therapies for all the human conditions we need willing participants. I have the utmost respect for Trial participants. As a firefighter he risked his life every day. Today he takes on the challenge of Alzheimers. I sincerely hope that this Clinical Trial therapy will be of benefit. I look forward to an update.

Hello:

My update is very limited information...I believe the research staff that they also are privy to little overall info; mostly they can only say what they observe regarding the 7 people they work with at their site. (actually, I think the number is now 10, as a 4th group for the first study was started).There are now 4 different doses being tested.The staff we work with do not know who is getting the real drug and who isn't (double-blind study). Of the original 7, who have been staggered as to start times, and therefore some have completed the original study and moved on to the next level where everyone will for sure receive the drug, none have improved, but some have had no decline in the one and a half years.My husband is not one of those; he has had considerable decline.

My guess is that the manufacturer has started with very low dosages to see what can be tolerated.I think the first trial had been in 2002, and it had to be halted because of brain swelling and bleeding.It was administered in a different form...the current tests are the new, "improved" form.I was told one of the primary purposes of this stage of the study is to determine how much can be safely administered.I think each of the current doses have been successful as far as causing no side effects or disastrous results. Still to be determined will be the amount necessary to have the effect of eliminating the tangles from the brain (which I understand they achieved in mice and monkeys, and actually had some success, but with too severe side effects, in people). I think that is the correct info; I hope I am not misleading anyone! I think there is still a long way to go in the balancing act!

The doctors we work with believe those privy to all the results would not continue if they were not seeing some hopeful results. My husband will have his final infusion next week (for phase 1) and will be eligible to have the drug for sure in July. I believe they said he would get the same dosage as he has been on. Again, I wonder if it is high enough of a level to have the results we all would wish for. Research is not a fast process, and each variable has to be looked at. I truly believe they are getting there! I am not sure that it will be in time for my husband, but with EOAD in the family, I think of our children as well.

Please keep in mind I am a lay person, and have shared my understanding of things, but it is possible that I am wrong in my understanding!

Marge

Marge, Thanks very much for your immediate attention to my query. I appreciate the burden you and your family are going thru with a loved one. The fight to find a better therapy is ongoing. I have followed this Clinical Trial that your husband is a participant since its inception. I think it is worth pointing out that this present Phase II Trial has been granted Priority Status as a Pivotal Trial by the FDA, the governing body. This is a very significant move by the FDA. You may be aware that there are Interim peeks built in to this Phase II Trial. This design is to enable an independent body to evaluate the ongoing status of the information gathered at the time. If the Independent Body is satisfied that the iformation meets the criteria, it can trigger an earlier Phase III Trial and a possible filing of the Pase II data for consideration by the FDA to bring a new therapy to the Alzheimer Disease population. The first peek took place in December 2006. We have moved on. The next timeframe to look for any possible decisive move will be mid year 2007. This would probably be around the time you report that your husband is expecting to have moved to an Open Label Phase. I notice the remark that some had no decline in one and a half years. I know this may be the opinion of a few people, but when you consider the frustration over the years to find any kind of medication to alliviate the AD symptoms, any glimmer of light must be followed. It is possible that your husband may have been on the placebo and may benefit from the therapy. This is something positive to cling on to in the coming months. I will try to update you in the coming months. Best wishes to you Marge, your husband and the family. Ger

Ger:

You sound very well informed (more so than I) regarding the Elan study...are you part of the medical team involved at one of the sites? I didn't think I had mentioned that my husband was a firefighter?!

Marge

Hi Marge, I am not part of the medical team of investigators. I have read your posts with the common interest in this Clinical Trial. I have browsed your posts for updates in this Trial. I was abliged to become a member recently to allow me to communicate my message to you. I tend to be happy to read your updates but curiosity won out this time. I do hope my forwardness has not brought offence. Best wishes to all. Ger

Ger:

You have in no way offended me; just my curiosity! You just sound so knowlegeable regarding the study...I didn't know the study had received a priority status by the FDA.Is there a web site where you are following the study progress? Are you or a family member involved in the study? Thank you for the kind wishes regarding my husband...

Marge