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

Hi Marge, The leading source of my information on the Clinical Trial may be found on the websites of combined companies elan.com and wyeth.com Other sources I recommend are alzform.org and clinicaltrials.gov There are all the publications such as Nature or Applied Neurology where you will come across the latest advances in medical science. The U.S. Food and Drug Administration website www.fda.gov is highly recommended. I do hope you this information will be of assistance to you. Best wishes, Ger

It sounds like what people have posted is sound advice. Our family also had a hard time getting my mother diagnose- although at the time we had no idea what was going on with her and alzheimers had not entered our minds! After years of hounding her doctor to do more tests, she was diagnosed. Then the evil doctor contacted the DMV without even telling us and my mother received a driver's licence revocation in the mail shortly afterwards. A rude awakening...we have since found a new doctor.

I would like to have those who have been diagnosed with EOAD to please describe the earliest symptoms and how they knew to seek help and try to find a diagnosis.
I know they say that the fogetting is forgetting where you keys are, it is forgetting what a key is. I would think it is more subtle than that. Would you mind sharing in as much detail as you can what you noticed as things were changing?

Deborah -- My first symptoms were forgetting things like my home phone number, or work related things -- like we used walkie talkies in my place of work and we all went by unit numbers rather than names on the radio and I couldn't remember anyone's unit number after using them non-stop for eight years! But I think the biggest thing was getting confused. I would stop to get gas and I couldn't figure out if I was going to work or coming home from work. I couldn't figure out where my son was and he was away at college. I finally decided to get help when my husband and I were out shopping and he went to a different department in the store and I couldn't remember where I was or how I got there. Then I knew I had problems. I was always one of those people that had almost a photographic memory so forgetting things was really unusal for me. And, that is what doctors look for --things that are unusual. If you always forget things, forgetting doesn't mean as much as if you never forgot things. If you would like more information feel free to email me.

krisbga@hotmail.com

Kris B.
www.creatingmemories.blogspot.com

Hi Everone. I am 42 with a 1 year old boy and 8 year old little girl. My husband, age 57, is in the process of getting a second opinion on his dementia. We have 2 different opinions from 2 neurologists at our HMO: one said probable ALZ, the other said MCI (which I talked him down to when I thought we had no long term care coverage)--he initially said FTD-semantic dementia. I am scared to death. I am new to this on-line community and read many of your posts. I hope I have found a home here for support because I feel so alone. Question: what is EOAD? I guess I have to learn the lingo. We have our panel diagnostic review at UCSF on 5/14. I have a feeling they are going to tell us either ALZ or FTD primary progressive aphasia. I try very hard to take it just one day at a time and not futurize, but that's easier said than done. Last year, when my husband's symptoms became alarming--before the Sept diagnosis, I was suffering from postpartum depression. In December I had a breast cancer scare. 2006 was an awful year, but I don't have cancer, so am thankful for one less scary thing. I am having trouble coping; am seeing a therapist and am about to go back on zoloft. I feel like I can't share any of my stresses with my husband because I don't want him to think I blame him or to feel guilty. He can still work and help with the kids but communication can be really tough at times and he gets confused; is unable to be flexible when something out of the routine comes up (this also makes him angry). His symptoms vary a lot--has good days and not so good days--but he has lost his sense of humor--that abstract reasoning thing and a lot of the everyday working vocabulary.

Dear Leila: My husband had AD but by then our children were grown, so your situation is going to be more difficult no matter the diagnosis. The diagnosis of 'probable' AD is common because there is no absolute way to determine it except by ruling out everything else, but it is about 85% correct. EOAD is 'early-onset Alz disease' and, generally, means the AD is before age 65. However, whether EOAD or not, the symptoms, treatments and responses are about the same. There are some EOAD groups because, as w/you, there are often problems w/children, careers, etc. It helps to talk to each other. I don't know much about FTD, but again, the things you deal w/are much the same. You are not alone, countless others have gone thru this, you will get a lot of support, understanding and no criticism here. Try to relax, take each day at a time, just give hubby love and love and love and understanding. Please go to the website below and read 'what you need to know' to help you understand what he is going thru and how to respond with less anger and frustration. Stay on your Zoloft or whatever keeps you somewhat calm, don't neglect your own well-being. Stay with us and ask anything, no matter how bizarre it may sound, someone will have had the same experience and an answer with a shoulder to lean on.

Hi Leila,

My name is Randy and I also live in Northern California, welcome to the message boards.

I am 48 years old and got my first diagnosis last September through my HMO as well and was originally told I had early onset alzheimers disease (EOAD) and that I would only have 2-3 years left to be functional. While I was horrified I was not ready to accept that either. I asked for a second opionion and was also sent to UCSF Memory and Aging Center in SF and I saw a wonderful Neurologist there. After going through a lot of testing, he changed my diagnosis to MCI (mild cognitive impairment). UCSF has followed me since then and has tested me every 3 months to see if I am progressing at all. I never went back to my original HMO unless I needed med refills.

Rest assured, you are not alone here and if you have questions, there are lots of experienced people (far more than me) that can help you through this journey.

Welcome
Randy

Hi Randy,
I gotta say that between your swift response and Betty's likewise, I had a good cry this morning--I guess I did not realize how alone I felt..it really does take talking to s.o. who is experiencing this either themselves or as a caregiver to really understand and know what to say. I would be willing to bet that we are members of the same HMO and I'm glad to hear that UCSF gave you a MCI diagnosis as their second opinion, rather than AD. Was Dr. Grafman the M.D. you saw at UCSF? If not, whom did you see? (hope that is not too private a question--don't answer if it is).. One of my big questions has been--how many 'good' years do I have left with my husband--our HMO did not go down that road and gave us a non-answer, which is that 'its hard to say'. I do not see some of the hallmark AD symptoms with my husband--he does not get disoriented in time or space, he does not lack iniative for the most part. Since his symptoms are most noticeable around language and communication, its really hard to separate out what is a language problem vs. what is a memory problem since so much of our memory is centered in language. Thanks again for responding to me--I'm having a hard time with it all right now and I feel like discovering the message boards is a watershed development--I only wish I had done so sooner. LMB

To All - Sorry I could only scan quickly and can't spare the time from my regular EMF work (trying to save children from Leukemia) as an EMF researcher/activist to comment to each individual.

The effects of low level, chronic, prolonged EMF/EMR exposures are very real and include every health problem all the way from poor sleep to cancer. Persons are frequently said to be suffering from MCI or CFS (chronic fatigue syndrome) when in fact, they are "electrosensitive."

Facts as reported by me to Dr. Marilyn Albert of the new Alzheimers' Task Force will help you understand the point(s) I am trying to make now without providing a real lengthy post: http://freepage.twoday.net/stories/3038870/

Best to call or email me with any questions. While I find the support on this forum to be very valuable -- their are a whole lot of wonderful persons here with lots of great advice, I just can't follow the posts enough to interact on a regular basis. Take care - Joanne

Hi Leila,

My heart goes out to you. I am both a survivor (mom had this disease for 15.5 years) and now a patient, what the doctors told you is the right answer, they just don't know. I wish they had originally said that to me instead of turning my life upside down.

I can tell you my mom went through every stage possible with this disease but everyone is different that is why they can't give you a timeline and it would be wrong to do so. I understand too that some may want to know the timeline but honestly, I dont think anyone could predict that.

My mom had AD 20 years ago, medical research has progressed since that time and there are great medications out there that do work for some to slow the progress of this disease. Some it works for some it does not, again, each individual is different.

I saw Dr. Howard Rosen at UCSF, he is a great doctor, took a long time with me and I too had a team of student doctors in with me during my first meeting with him. There is a drug student who will review the medications your husband is currently taking, one gives you a physical examination, one gives him a memory test (quite lengthy) and I think there was one more, but I'm sorry I can't remember now.

I have been followed now every 3 months by Dr. Rosen, I will not return to my original neurologist and I used to work at the clinic where I was also a patient. It could possibly be the same one, not sure, I am in Sunnyvale, CA, not sure where you are located.

Anyway, there are lots of people here to chat with and to answer your questions when needed. There is also a caregivers forum on here I believe.

Just remember your not alone in this journey, even though I am now a patient, I can help in some areas as I was the care giver for my mom.

I hope this all helps to ease you some, just take each day as it comes and be as supportive as possible no matter what.

I'm available to talk if you want, you can contact me via personal email at itsforlife@sbcglobal.net if you would like.

I've rambled on here so enough for now. Have a blessed night and weekend.

Randy,
I asked my husband about Dr. Rosen but he does not think that is one of the folks he has seen--nonetheless, I will keep my ears tuned for that name. We live in Foster City, btw. Oh, and what you call rambling, well, its a life line for me--so thank you.
I wonder if UCSF will want my husband to come in every 3 months for a check up...we are set to move back to the Washington, D.C. area in July and coming back every 3 months might be tough, but 2x a year would be more doable.
If your Mom had AD, then does that mean you have EOAD by definition? I believe my mother in law has AD...but I don't believe a proper work up was ever done one her--I think it was one of those things where the general practitioner asked if she was forgetting things, she said 'yes' and he made a diagnosis based on that--I'm sorry to say that I'm not being flippant; I really think that's what happened.
Thanks for the supportive comments--the internet is a great thing! LMB

LMB:

I'm am sorry to hear about your husband. My husband 52 was diagnosed this year. I went through a period of deppression after he lost his job since I knew it was AD.

The best advice I can give to you is enjoy every day you have with him. Give him lots of love and encouragement. Have him stay active and keep him challenged. I truely believe if you both can keep positve about this it will slow the disease down. My husbands brother 49 has EOAD and it much more advanced than my husband. I attribute this to the fact that he has depression, is divorced, smokes and lives with his father and does not have much love in his life.

This board is a good source of information. The Alzheimer's assocation has been very helpfull to us.

quote:

If your Mom had AD, then does that mean you have EOAD by definition?

No, EOAD, in general, means someone gets AD before age 65, but the disease, treatment, responses, etc are about the same as with the elderly.

Hello all,
This is my first post on this site. I am 48 years old, and am in the beginning stages of trying to find out what is wrong with me. I began seeing a neurologist a few months ago, and in my initial exam, I had an abnormal reflex (right palmomental), and I also could not recall one of the three random words I was asked to remember. I had an abnormal EEG indicating nonspecific moderate temporal cerebral dysfunction and intermittent polymorphic delta in the termporal regions. It also showed sharply contoured waveforms in the bitemporal regions, but they are not epileptiform in nature. I also had a PET scan that shows nonspecific symmetric relative hypometabolism of the temporal lobes. The finding is symmetric and there is preservation of the normal hypointense relationship of the mesial temporal lobe to its lateral cortex. Apparently the rest of my brain appears normal at this time. An MRI showed nothing unusual, and other lab tests show no infections or vitamin deficiencies. The doctor said they have ruled out tumors, infections and epilepsy.

My maternal grandmother was diagnosed with Alzheimers in her late seventies, and my uncle (her son) was diagnosed with early onset Alzheimers in his early 50's. My first diagnosis from my neurologist was "alteration of awareness" and after the EEG and PET scans, my diagnosis is now "early memory loss". I was put on Aricept as a precautionary treatment, but had horrible, worsening muscle cramps after the dosage went from 5 to 10mg (I think), and I had to discontinue it. Next they put me on Razadyne ER beginning at 8mg. After I read about it and questioned that it said this should not be used for mild cognitive impairment, since I don't have a diagnosis yet, we decided to stop it until further testing is done. I have been referred to the Chief of Neurology at Duke Medical Center, Dr. Warren Strittmatter, and will first see him in a week. Next week I am having neuropsych testing.

I had two back surgeries in the summer of 2005, including a 2 level spinal fusion, and noticed afterwards that I never regained my ability to fully concentrate and comprehend information. I attributed this to anesthesia, and it did improve somewhat after several months. However, I never got back to where I was prior to the surgeries. However, about 6-8 months ago, I began noticing things like waking in the morning and having no idea what season of the year it is (to get dressed for work), sometimes driving and suddenly realizing I had no idea where I was going or why, temporarily forgetting names of people close to me (i.e. my children, coworkers), losing count when doing stretching exercises for my back (supposed to hold and count to 40, and I'd forget where I was.. could have been 10 or 30 and I had no clue), being asked about projects at work of which I would have sworn I never knew about but then finding notes or emails I had written about it, my son complaining that I had asked him the same question multiple times but I did not realize it. Those are just some examples. I have what I call "cloudy" and "clear" periods. Sometimes these last all day, or maybe just a short time. Sometimes, I feel like I just got off a roller-coaster and my head/body need time to stabilize. Sometimes it almost feels like there is a clamp (slight pressure) from the middle of my forehead around the top and right side of my head, and sometimes my head feels so heavy that I must lie down. During cloudy times, I just cannot focus and feel very confused. I make lists but then either forget them or can not keep them organized. I have always had almost a photographic memory so this is extremely unusual for me. Everywhere I have worked, I have always been known to never forget anything. I am currently a senior executive at my company, and have been under tremendous stress and worked long hours for the last 3 years.

I have been referred to Dr. Warren Strittmatter, Chief of Neurology, at Duke Medical Center and will have my first visit in a week. Next week I have two days of neuropsych tests scheduled.

I am a single mom (divorced for 10 years) and have two sons, an 18 y/o graduating from HS in a few weeks and headed to college, and a 22 y/o who is disabled at home (mildly retarded, mild cerebral palsy and epilepsy from bacterial meningitis as an infant). Their dad is nearby but I have always handled everything regarding my children. Other than some folks at my church, I really don't have much of a support system. All my time is spent either working or with my children's activities. I am scared. I just stumbled across this website while reading about Alzheimers and various other forms of dementias. I would appreciate any advice or thoughts from anyone who might read this, especially if you have had similar symptoms and reports.

Thank you,
Beth

Beth -- you sound like a very strong person with everything you have had to deal with. It sounds like you are taking the right steps especially going to Duke next week. A lot of your symptoms sound like mine when I was diagnosed at the age of 46 (I'm now 51). I too experienced tremendous muscle cramps with Aricept and I now take Exelon and Namenda and they seem to be working well.

You will find lots of friends and help on this forum. Hang in there and keep us posted on your doctor reports. Please feel free to email me if you would like.

Kris B.
krisbga@hotmail.com
www.creatingmemories.blogspot.com

quote:

Originally posted by ashware:
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.

I am a 57 yr old EOAD patient. After about 3 years of going or should I say shifted from one doctor to another I finally was diagnosed with EOAD about 2/1/2 yrs ago by a wonderful neurologist that specializes in AD. His passion is trying to find a cure. My husband also took me to another AD dr to confirm what my dr had diagnosed. After going through a 2nd neuro testing he also confirmed the diagnoses of EOAD and sent me back to my dr and said he was the best to stick with him. Have you tried calling your local Alz Assoc for a referral to someone that specializes in AD? I know how frustrating it can be for I really thought that I had become a hypochondriac and became very depressed which made my AD much worse. Now, I am in a fight with insurance over my dr. He is the one that I feel saved my life but the ins. co. doesn't seem to understand. Since my coping skills are completely gone I can't tell you what a tail spin I have been in lately. My husband tells me to hang in there, he is working on it, but he came home Friday in a frustrated state, which put me in a frustrated state and wow you should have been a fly on the wall (or maybe not). He had been on the phone all week or faxing or writing letters to 100 different people (you know pass off to person on your right kind of game) with the ins co. and trying to keep his job. I didn't mean to rattle on, but it just makes me so mad. Stand your ground, keep on insisting and the main thing is to try & find a neurologist that specializes in AD. Once I was diagnosed, I had no problem getting my disability Soc. Sec. My meds I take Razadyne & Namenda have helped me a lot, but I do have my moments. Our daughters call it mom is having "One of Her Episodes". Any little change in situation and my mind automatically pushes the "Panic" button. When this happens my husband is just about the only person that came calm me down. Good luck to you and let me hear from you. You can email me if you wish.

See this interview about getting a diagnosis. alzforum.org just started and Early Onset section. It is a place where researchers collaborate.

http://www.alzforum.org/eFAD/profiles/profile.asp

Thanks so much Kris B. I appreciate your support and will post what I learn after my tests results this week and my doctor visit next week.

I read some of your blog and you seem to be doing well and have a great attitude. That is very encouraging so thank you for sharing on here.

quote:

Originally posted by Ger:
Hi Marge, The leading source of my information on the Clinical Trial may be found on the websites of combined companies elan.com and wyeth.com Other sources I recommend are alzform.org and clinicaltrials.gov There are all the publications such as Nature or Applied Neurology where you will come across the latest advances in medical science. The U.S. Food and Drug Administration website www.fda.gov is highly recommended. I do hope you this information will be of assistance to you. Best wishes, Ger

quote:

Originally posted by Ger:
Hi Marge, The leading source of my information on the Clinical Trial may be found on the websites of combined companies elan.com and wyeth.com Other sources I recommend are alzform.org and clinicaltrials.gov There are all the publications such as Nature or Applied Neurology where you will come across the latest advances in medical science. The U.S. Food and Drug Administration website www.fda.gov is highly recommended. I do hope you this information will be of assistance to you. Best wishes, Ger

Marge, The Good News out today is that AAB-001 is moving into a Phase 3. There was a recent Interim Look and in its totality has given Elan/Wyeth the confidence to move into a Phase 3 a year earlier. This is a great sign, a possible disease modfying drug for AD. I hope your husband will benefit from Bapineuzumab. You are all heros. Mankind is indepted to your courage to enter these groundbreaking Clinical Trials. Today's announcement is a giant leap towards an available therapies for Alzheimers Disease in the not too distant future. Hang in there all you who may be afflicted and the dedicated caregivers, there really is hope. Best wishes to you Marge, GER

quote:

Originally posted by Ger:

quote:

Originally posted by Ger:
Hi Marge, The leading source of my information on the Clinical Trial may be found on the websites of combined companies elan.com and wyeth.com Other sources I recommend are alzform.org and clinicaltrials.gov There are all the publications such as Nature or Applied Neurology where you will come across the latest advances in medical science. The U.S. Food and Drug Administration website www.fda.gov is highly recommended. I do hope you this information will be of assistance to you. Best wishes, Ger

Marge, The Good News out today is that AAB-001 is moving into a Phase 3. There was a recent Interim Look and in its totality has given Elan/Wyeth the confidence to move into a Phase 3 a year earlier. This is a great sign, a possible disease modfying drug for AD. I hope your husband will benefit from Bapineuzumab. You are all heros. Mankind is indepted to your courage to enter these groundbreaking Clinical Trials. Today's announcement is a giant leap towards an available therapies for Alzheimers Disease in the not too distant future. Hang in there all you who may be afflicted and the dedicated caregivers, there really is hope. Best wishes to you Marge, GER

Marge, forgot to publish the news PR. Here it is.

21 May 2007
Elan and Wyeth to Initiate Phase 3 Clinical Trial of Bapineuzumab (AAB-001) in Alzheimer's Disease
DUBLIN, Ireland & Madison, N.J.--(BUSINESS WIRE)--May 21, 2007--Elan Corporation, plc (NYSE: ELN) and Wyeth Pharmaceuticals, a division of Wyeth (NYSE: WYE), today announced the decision to initiate a Phase 3 clinical program of their lead immunotherapeutic candidate, Bapineuzumab (AAB-001), for the treatment of patients with mild to moderate Alzheimer's Disease. This decision was based on the seriousness of the disease and the totality of what the companies have learned from their immunotherapy programs, including a scheduled Interim look at data from an ongoing Phase 2 study, which remains blinded. No conclusion about the Phase 2 study can be drawn until the study is completed and the final data are analyzed and released in 2008. Phase 3 clinical trial design will be finalized with regulatory agencies, and subject to regulatory approval, it is intended for the trial to begin in the second half of 2007.

It is important to remember that Alzheimer's disease is a complex and formidable challenge, and our immunotherapeutic programs still contain inherent risks.

About Bapineuzumab

Bapineuzumab (AAB-001) is a humanized monoclonal antibody that received Fast Track designation from the United States Food and Drug Administration (FDA) for treatment of mild to moderate Alzheimer's disease. Fast Track designation facilitates development and may expedite regulatory review of drugs that the FDA recognizes as potentially addressing an unmet medical need for serious or life threatening conditions.

There are two ongoing Phase 2 studies with Bapineuzumab. The first Phase 2 trial is a randomized, double-blind, placebo controlled, multiple ascending dose study of 4 cohorts of the approximately 240 total patients with mild to moderate Alzheimer's disease. The primary objective of the trial is to assess the safety of bapineuzumab. Assessments of cognitive and functional status are also being made in the trail, and each patient's participation lasts approximately 18 months. The key end-points include: ADAS-Cog (assesses cognition), Neuropsychological Test Battery (NTB) and DAD score (measures quality of life). The second Phase 2 trial is an Alzheimer's beta-amyloid imaging study in 30 patients and is being conducted in Europe. The companies do not expect that any Phase 2 data will be released into the public domain until the completion of the Phase 2 trials in 2008.

About Alzheimer's Disease

Alzheimer's disease is a progressive brain disorder that gradually destroys a person's memory and ability to learn, reason, make judgments, communicate and carry out daily activities. As Alzheimer's progresses, individuals may also experience changes in personality and behavior, such as anxiety, suspiciousness or agitation, as well as delusions or hallucinations. It is currently estimated that more than 5 million Americans and more than 24 million people worldwide have Alzheimer's disease (Source: Alzheimer's Association and Alzheimer's Disease International)

About the Elan and Wyeth Collaboration

The Elan and Wyeth Alzheimer's Immunotherapy Program (AIP) is a 50:50 collaboration to research, develop and commercialize an immunotherapeutic approach that may be used for the treatment of mild to moderate AD and possibly to prevent the onset of the disease. Current AIP programs include bapineuzumab (AAB-001), AAB-001 SubQ, ACC-001 and AAB-002. Wyeth and Elan equally share all costs and potential revenues from this collaboration.

About Elan

Elan Corporation (NYSE: ELN), plc is a neuroscience-based biotechnology company committed to making a difference in the lives of patients and their families by dedicating itself to bringing innovations in science to fill significant unmet medical needs that continue to exist around the world. Elan shares trade on the New York, London and Dublin Stock Exchanges. For additional information about the company, please visit http://www.elan.com

About Wyeth

Wyeth Pharmaceuticals, a division of Wyeth, has leading products in the areas of women's health care, infectious disease, gastrointestinal health, central nervous system, inflammation, transplantation, hemophilia, oncology, vaccines and nutritional products.

Wyeth is one of the world's largest research-driven pharmaceutical and health care products companies. It is a leader in the discovery, development, manufacturing and marketing of pharmaceuticals, vaccines, biotechnology products and non-prescription medicines that improve the quality of life for people worldwide. The Company's major divisions include Wyeth Pharmaceuticals, Wyeth Consumer Healthcare and Fort Dodge Animal Health. For additional information about the company, please visit https://www.wyeth.com.

Safe Harbor / Forward-Looking Statements

The statements in this press release that are not historical facts are forward-looking statements that involve risks and uncertainties and include, without limitation, the risks associated with the inherent uncertainty of the clinical development of AAB-001 for Alzheimer's disease and whether AAB-001 will ever be approved for commercialization. Factors which could cause actual results to differ materially from the companies' current expectations include the risks that problems or delays may arise during preparations for the proposed Phase 3 trial or, if the proposed Phase 3 trial is initiated, during the course of the Phase 3 trial, that the Phase 2 trials may not be successfully completed, and even if the Phase 2 trials are successfully completed, that results in the proposed Phase 3 trial may not show that AAB-001 is safe and effective, as well as the other risks and uncertainties described from time to time in the companies' periodic and other reports filed with the Securities and Exchange Commission.

Ashware:
You are not alone. My father began having problems a couple of years ago. He was fired from his job because he was no longer able to perform, and was unable to work again. Therefore, at the age of 61, no health insurance. Therefore no testing available, except for a CT done in an emergency room. He was diagnosed in the ER with "multi-infarct dementia and possible alzheimer's" That was about a year and a half ago. He finally won his disability last December. In our state, he is not eligible for medicaid, and he has not been officially disabled long enough for medicare. You would be amazed how forthcoming doctors AREN'T when they know they won't be paid! He goes to a low-cost health clinic for the uninsured, and they aren't worried about confirming his diagnosis. But his illness has progressed in typical ALZ fashion. He lives with me now, cannot bathe himself or even wash his own face now. He sundowns at night, wandering the house with no idea where he is. Still no definitive ALZ diagnosis. He probably never will have one. He also went through the obsessive phone-calling stage, so I sympathize with that too. My dad worked his whole adult life, and the medical community considers him a waste of their time. I have only 2 suggestions for you. First of all, the doctor may be willing to diagnose "dementia" without actually calling it ALZ. You could then use that to apply for disability. Second, corny as it sounds, it may help to contact your congressman's office. It helped in Dad's case.